Exploring the experience and perceptions of quality of life of the person with severe dementia living in a care home, using a collective case study approach.
Margaret Mullen Brown.
Thesis submitted in partial fulfilment of the requirements of the University of the West of Scotland for the award of Doctor of Philosophy.
July 2016 i
Declaration I, Margaret Mullen Brown, hereby certify that this thesis has been written by me and has not been submitted for any other comparable academic award.
Margaret Mullen Brown. Date: 27th July 2016.
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Acknowledgements I am happy to take this last step on my journey through this thesis by thanking all those people who have guided and supported me in every aspect of this work. Many of the people with severe dementia who were central to this study have passed away and I think of all of them often. My gratitude to them and their families is immense. I can only hope I have done some justice to their kindness and fortitude. To the staff participants and management of the dementia unit, care home and company, I offer my admiration and thanks for exposing their care and practice to someone who was essentially a stranger. Their love and care for the residents is a credit to all of them. My thanks to my early stage supervisory team Professor Craig White and Dr Angela Kydd for their diligent attention to the planning and development of my study. For my supervisors over the remaining study period, thanks to Dr Karen Watchman and Dr Beverley Young for their support and assiduous care. I sincerely thank Professor Debbie Tolson for her incisive, creative and informed expertise and her inexhaustible patience, I could not be more grateful. Of course I have to thank a number of intelligent and wonderful colleagues who have shared discourses over these years of work and particularly Professor Pauline Banks, Dr Barbara Sharp, Anna Waugh, Jenny Henderson and Michael Brennan. For those I love. I want to thank my friends and wider family, especially my three sisters Marjory, Sheila and Ann Michelle who have cajoled and cared for me throughout. My three sons Stephen, Michael and David have always accepted my long years in academic endeavour with love, some impatience but cheering me on all the way. At the end and from the beginning, my husband Wullie Brown, stoical, silent and a source of strength and love throughout. I would not have survived this otherwise.
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Abstract This thesis explores the experience and perceptions of quality of life of the person with severe dementia living in a care home. Paucity of research on this topic is complicated by the person’s reduced verbal communication and vulnerability. Highly dependent on others for all aspects of living, there is a risk the person may be perceived as having a limited capacity to experience a positive quality of life, leading to reduced expectations and ambitions in care. Drawing on a social constructionist perspective has informed a qualitative collective case study approach. Mixed methods were used, including 18 hours of observation and 24 interviews, supported by care documents, rating scales and artefacts. This empirical data was examined through theoretical perspectives on quality of life, interwoven with philosophical concerns about the self and agency in severe dementia. Cross case analysis, integrating the findings from six in depth individual case reports, identified themes interrogated and presented within four key assertions. These identify how aspects of quality of life were expressed through the senses and body of the person, supported by a life narrative; where a nuanced and shared understanding by others may influence quality of life; how recognition of this fragile balance for the person might be maintained and refined, leading to a recognition and refocusing on quality of life for the person with severe dementia. The implications arising from this thesis indicate a need to refocus towards sensory-based practice in supporting the fundamentals of daily life, within a shared and nuanced framework of relationships. Evidence from this study shows that aspects of quality of life can be discerned, influenced and enhanced for the person with severe dementia. As a singular period in the life of the person, emphasis on quality of life should be more closely integrated into the narrative of severe dementia.
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Table of Contents Chapter One: Background to the Study ................................................................1 1.1 Introduction ................................................................................................................................... 1 1.2 Background and Context .......................................................................................................... 2 1.3 Quality of Life in Severe Dementia ....................................................................................... 5 1.4 Aims and Objectives of the Study .......................................................................................... 7 1.4 Structure of the Thesis............................................................................................................... 7
Chapter Two: Review of the Literature ............................................................. 10 2.1 Introduction .................................................................................................................................10 2.2 Search Strategy ...........................................................................................................................10 2.3 Severe Dementia and Quality of Life ..................................................................................12 2.4 Dialogues about Severe Dementia ......................................................................................13 2.4.1 The ‘Staging’ of Severe Dementia ...............................................................................15 2.5 Interrogating Quality of Life ..................................................................................................17 2.5.1 Seeking Consensus about Quality of Life ................................................................18 2.6 Normative Measures of Quality of Life in Severe Dementia ....................................19 2.6.1 Measuring Quality of Life...............................................................................................20 2.6.2 Effectiveness of Measures .............................................................................................23 2.6.3 Concerns About a Normative Approach ..................................................................25 2.7 Methods Used to Understand Quality of Life..................................................................27 2.8 Factors Influencing Quality of Life in Severe Dementia.............................................31 2.10 Quality of Life on the Continuum of Dementia............................................................33 2.11 Quality of Care and Quality of Life ...................................................................................34 2.12 Experiencing Quality of Life in Severe Dementia.......................................................38 2.12.1 Emotion and Severe Dementia .................................................................................41 2.12.2 Awareness in Severe Dementia ................................................................................43 2.12.3 Embodiment and Severe Dementia ........................................................................45 2.13 Key Findings from the Literature Review .....................................................................46
Chapter Three: Theoretical and Methodological Perspectives. ............... 49 3.1 Introduction .................................................................................................................................49 3.2 Philosophical Perspectives ....................................................................................................49 3.2.1 Social Constructionism ...................................................................................................51 3.2.2 Integrating Perspectives ................................................................................................53 3.3 Case Study: Methodological Perspectives .......................................................................53 3.3.1 Qualitative Research........................................................................................................54
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3.3.2 Case Study Methodology ................................................................................................55 3.3.3 Stake’s Case Study Approach .......................................................................................57 3.4 Case Study Design ......................................................................................................................58 3.4.1 The Bounded Case ............................................................................................................58 3.4.2 Data Sources and Methods............................................................................................59 3.5 The Researcher in Case Study Research. .........................................................................61 3.6 Analytic Plan ................................................................................................................................62 3.6.1 Individual Case Analysis ................................................................................................62 3.6.2 Case Study Report.............................................................................................................64 3.6.3 Cross Case Analysis ..........................................................................................................65 3.7 Ethical Issues ...............................................................................................................................66 3.8. Establishing Rigour in Case Study .....................................................................................70
Chapter four: Methods ............................................................................................. 71 4.1 Introduction .................................................................................................................................71 4.2 Overview of the Research Design........................................................................................71 4.2.1 Development of the Study Design ..............................................................................73 4.3 Consideration of the Researcher Role ...............................................................................77 4.4 Identifying and Recruiting Participants ...........................................................................78 4.4.1 Negotiating Access to the Research Setting ...........................................................81 4.4.2 Participant Recruitment ................................................................................................83 4.3 Ethical Approval .........................................................................................................................84 4.4 The Case Studies.........................................................................................................................85 4.5 Methods .........................................................................................................................................88 4.5.1 Non-participant Observation .......................................................................................88 4.5.2 Semi-structured Interviews .......................................................................................91 4.5.3 Analytic Notes ....................................................................................................................93 4.5.4 Other Data Sources...........................................................................................................94 4.6 Data Analysis ...............................................................................................................................96 4.6.1 Coding the Data .................................................................................................................97 4.7 Cross Case Analysis ................................................................................................................ 100 4.8 Rigour and Credibility........................................................................................................... 101 4.9 Leaving the Field of Study ................................................................................................... 102
Chapter five: Findings and Analysis ................................................................ 104 5.1 Introduction .............................................................................................................................. 104 5.2 The Care Home......................................................................................................................... 104
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5.2.1 Case Study Participants ............................................................................................... 105 5.3. Case study one: Mrs Flower............................................................................................... 108 5.3.1 Biography .......................................................................................................................... 108 5.3.2 Quality of Life: Mrs Flower’s Perspective ............................................................ 109 5.3.3 Quality of Life: Daughter’s perspective................................................................. 112 5.3.4 Quality of Life: Staff perspective.............................................................................. 113 5.3.5 Analysis .............................................................................................................................. 114 5.3.6 Mrs Flower’s Summary ............................................................................................... 125 5.4. Case study two: Mrs Gardener ......................................................................................... 126 5.4.1 Biography .......................................................................................................................... 126 5.4.2 Quality of Life: Mrs Gardener’s Perspective ....................................................... 127 5.4.3 Quality of Life: Daughter’s Perspective ................................................................ 131 5.4.4 Quality of Life: Staff Perspective.............................................................................. 132 5.4.5 Analysis .............................................................................................................................. 134 5.4.6 Mrs Gardener’s Summary........................................................................................... 144 5.5. Case study three: Mr Artist ................................................................................................ 146 5.5.1 Biography .......................................................................................................................... 146 5.5.2 Quality of Life: Mr Artist’s Perspective ................................................................. 147 5.5.3 Quality of Life: Daughter’s Perspective ................................................................ 150 5.5.4 Quality of Life: Staff Perspective.............................................................................. 152 5.5.5 Analysis .............................................................................................................................. 153 5.5.6 Mr Artist’s Summary .................................................................................................... 165 5.6. Case study four: Mrs Walker ............................................................................................. 166 5.6.1 Biography .......................................................................................................................... 166 5.6.2 Quality of Life: Mrs Walker’s perspective ............................................................ 167 5.6.3 Quality of Life: Husband’s perspective ................................................................. 171 5.6.4 Quality of life: Staff perspective ............................................................................... 172 5.6.5 Analysis .............................................................................................................................. 173 5.6.6 Mrs Walker’s Summary ............................................................................................... 181 5.7 Case study five: Mrs Musician............................................................................................ 182 5.7.1 Biography .......................................................................................................................... 182 5.7.2 Quality of Life Mrs Musician’s perspective.......................................................... 183 5.7.3 Quality of life: Daughter’s perspective .................................................................. 187 5.7.4 Quality of life: Staff perspective ............................................................................... 187 5.7.5 Analysis .............................................................................................................................. 188 5.7.6 Mrs Musician’s Summary ........................................................................................... 198
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5.8 Case study six: Mrs Cook...................................................................................................... 199 5.8.1 Biography .......................................................................................................................... 199 5.8.2 Quality of Life Mrs Cook’s Perspective.................................................................. 200 5.8.3 Quality of life: Daughter’s perspective .................................................................. 204 5.8.4 Quality of life: Staff perspective ............................................................................... 205 5.8.5 Analysis .............................................................................................................................. 206 5.8.6 Mrs Cook’s Summary .................................................................................................... 215 5.9 Cross Case Analysis ................................................................................................................ 217 5.10 Overview of Themes. .......................................................................................................... 219 5.10.1 Quality of Life and the Person with Severe Dementia. ................................ 219 5.11 Analysis of Individual Themes........................................................................................ 220 5.11.1 Theme one: Expressing and Discerning Needs ............................................... 220 5.11.2 Theme Two: Complex Care Needs in Severe Dementia .............................. 224 5.11.3 Theme Three: A Sense of Connection and Engagement .............................. 227 5.11.4 Theme four: Interpersonal Relations in the Life of the Person with Severe Dementia ....................................................................................................................... 230 5.11.5 Theme Five: The Illusion of Home ....................................................................... 232 5.12 Summary of Findings .......................................................................................................... 234
Chapter Six: Discussion, Recommendations and Conclusion ................. 235 6.1 Introduction .............................................................................................................................. 235 6.2 Key Assertions ......................................................................................................................... 236 6.3 Merits and Limitations of the............................................................................................. 236 6.4 Discussion of the Study Assertions.................................................................................. 242 6.4.1 Assertion One .................................................................................................................. 242 6.4.2 Assertion Two ................................................................................................................. 247 6.4.3 Assertion Three .............................................................................................................. 250 6.4.4 Assertion Four................................................................................................................. 255 6.5 Recommendations and Considerations ......................................................................... 261 6.5.1 Research ............................................................................................................................ 261 6.5.2 Practice and Education ................................................................................................ 263 6.5.3 Policy Considerations................................................................................................... 266 6.6 Conclusion ................................................................................................................................. 268
References ................................................................................................................ 270 Appendices ............................................................................................................... 305
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Table of Figures Figure 1: Commonly Used Measures ..............................................................................................21 Figure 2: Overview of the Collective Case Study Design ........................................................72 Figure 3: Quality of Life Dimensions, after Lawton (1991). .................................................74 Figure 4: Data Collection Guide after Lawton, 1991 ................................................................76 Figure 5: Selection Criteria for Participants with Severe Dementia .................................79 Figure 6: Data Management Protocol ............................................................................................86 Figure 7: Coding Frame Based on Lawton's Theory ................................................................97 Figure 8: Cross Case Matrix ............................................................................................................. 100 Figure 9: Key Characteristics of Participants........................................................................... 106 Figure 10: The Case Report ............................................................................................................. 107 Figure 11: Mrs Flower's Participant Characteristics ............................................................ 108 Figure 12: Daily Activity: Number of hours spent in each activity ................................. 109 Figure 13: Example observation period: movement record and field notes .............. 110 Figure 14: Sample of analysis using Lawton's Framework................................................ 116 Figure 15: Elaborative codes and findings................................................................................ 120 Figure 16: Mrs Gardener’s participant characteristics ........................................................ 126 Figure 17: Daily activity: number of hours spent in each activity .................................. 128 Figure 18: Example observation period: movement record and field notes .............. 129 Figure 19: Sample of analysis using Lawton’s Framework................................................ 135 Figure 20: Elaborative codes and findings................................................................................ 139 Figure 21: Mr Artist’s participant characteristics ................................................................. 146 Figure 22: Daily activity: number of hours spent in each activity .................................. 148 Figure 23: Example observation period: movement record and field notes .............. 149 Figure 24: Sample of analysis using Lawton’s Framework................................................ 155 Figure 25: Elaborative codes and findings............................................................................... 160 Figure 26: Mrs Walker’s participant characteristics ............................................................ 166 Figure 27: Daily activity: number of hours spent in each activity .................................. 168 Figure 28: Example observation period: movement record and field notes .............. 169 Figure 29: Sample of analysis using Lawton’s Framework................................................ 174 Figure 30: Elaborative codes and findings............................................................................... 177 Figure 31: Mrs Musician’s participant characteristics. ........................................................ 182 Figure 32: Daily activity: number of hours spent in each activity .................................. 184 Figure 33: Example observation period: movement record and field notes. ............. 185
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Figure 34: Sample of analysis using Lawton’s Framework................................................ 190 Figure 35: Elaborative codes and findings............................................................................... 194 Figure 36: Mrs Cook’s participant characteristics. ................................................................ 199 Figure 37: Daily activity: number of hours spent in each activity .................................. 201 Figure 38: Example observation period: movement record and field notes .............. 202 Figure 39: Sample of analysis using Lawton’s Framework................................................ 208 Figure 40: Elaborative codes and findings............................................................................... 211 Figure 41: Cross case analysis of findings and themes ........................................................ 218 Figure 42: Quality of life in severe dementia ........................................................................... 219
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Chapter One: Background to the Study 1.1 Introduction As a nurse and teacher for many years, the person with severe dementia has played a significant part in my career. I began my working life in the largest psychiatric hospital in Scotland and spent long periods on wards where over one hundred patients lived, many of whom experienced a range of dementia related conditions. Despite the task oriented work I found myself drawn to the person with severe dementia who seemed unable to connect with the world. Contact with other human beings was being washed or fed; staff had little time to do more, yet I was convinced that there was a way to engage with that person that I had not yet learned. I worried about what that life was like in this world of care, concerned that there was something within the person that was suffering as a result of our lack of understanding. As my knowledge and experience grew, I continued to return to this concern and read widely, attending courses of study, all the while trying to understand my unease. I continued to interrogate my values and beliefs about caring for others grounded in the work of early nurse theorists, such as the interpersonal relations theories of Peplau (1988). This began to form my core beliefs about the therapeutic influence of nurses, based on interpersonal relations and interaction. This social constructionist view predates a shared perspective within a group of theorists, including the person-centred approach of Kitwood (1997), the relationship focussed approach, initially for older people, by Nolan et al (2006) and the philosophical perspectives on the preservation of the self in dementia by Sabat (2001) and Hughes (2011). Drawing on the work of Kitwood (1997), my Master’s dissertation study examined the concept of autonomy and enabling choice, as perceived by practitioners (Brown, 2000). My findings indicated that while staff had good intentions, their reported behaviour did not support a person-centred approach for the person with dementia. My early experience of the person with severe dementia living in a care setting, together with my studies and research, had focussed on practising and teaching about quality of care.
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However my philosophical assumptions developed by social constructionist focussed theories and reflection moved beyond quality of care and back to my earliest concerns about quality of life. In order to address this concern, this thesis is an exploration of quality of life in this singular period in the life of the person with dementia, now unable to self-care without considerable support and living in a care home. Grounded in my findings and available literature, I provide a rich description of this experience and present issues about discerning and understanding quality of life. Having considered my motivation for being drawn to this topic, I explain the background and context for the study then examine the definition and understanding of severe dementia and introduce the concept of quality of life. I outline the aim and objectives for this study and provide an overview of the study design. Finally, I delineate the structure of the thesis. 1.2 Background and Context The person who survives to the severe stage of dementia becomes unable to carry out activities of living independently, has severe memory and other cognitive impairments and may become unable to communicate verbally (Reisberg et al, 2006). Neurological deterioration, affecting muscle control and co-ordination may lead to falls. Incontinence, sleep and dietary problems are frequent outcomes (Kovach, 1997). Living with these impairments can be protracted (Reisberg et al, 2006). While this picture appears unremittingly negative, some authors contend that quality of life is still achievable (Nuffield Council on Bioethics, 2009). Severe dementia is a culmination of a long journey though a life limiting syndrome, defined as a “disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement” (World Health Organization (WHO), 2010). Dementia has a number of causes, including Alzheimer’s disease, vascular dementia and dementia with Lewy bodies (Knapp and Prince, 2007). By 2025 one million people in the UK are forecast to have some form of dementia (Knapp and Prince, 2007; Prince et al, 2014). Even
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with prospective treatments, people with dementia are still likely to require care in future. As a result of these demographics and challenges in prevention, care and treatment, dementia is recognised worldwide as a major public health concern. In the UK early reports on the prevalence and economic costs identified dementia as a national priority (Knapp and Prince, 2007). Similarly, the World Health Organization (WHO) and Alzheimer’s Disease International have described dementia as a public health priority (WHO and ADI, 2012). Subsequently, during the G8 summit in 2013, dementia was identified as an international direction of focus and one of the 12 commitments made there was to search for innovations to improve quality of life for people with dementia (Department of Health, 2013). Scotland has led the way, in Europe and beyond, and dementia became a national priority in 2007, followed by the first Dementia Strategy (Scottish Government, 2010a). Together with the Standards of Care for Dementia (Scottish Government 2011a) and the Promoting Excellence, knowledge and skills framework, (Scottish Government, 2011b), this has led a drive for improvement in all aspects of diagnosis, care and treatment. Considerable progress includes an increase in diagnostic rates and improved post diagnostic support, care improvements in acute hospitals and a range of educational initiatives and materials to support staff and carers. Scotland’s National Dementia Strategy for 2013-2016 reviewed these achievements and set out a plan for the next steps (Scottish Government, 2013). Yet there is little specific policy about the person with severe dementia who lives in a care homes and one of few pertinent statements: “people in hospital or other institutional settings always being treated with dignity and respect” (Scottish Government, 2013-2016:4). Alzheimer Scotland has identified this deficit and recently turned to this stage of dementia with the development of new guidance in the Advanced Dementia Practice Model (Alzheimer Scotland, 2015). Information about the prevalence of severe dementia is limited, not least because of the lack of consensus about the definition of the term. It is suggested that 17% of those 75 years and older with dementia, could be classified as in the severe stage (Voisin and Vellas, 2009). However, North
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American data cites a prevalence of 21% of people with severe dementia (Schafirovits-Morillo and Suemoto, 2010). UK reports indicate there were over 80,000 people with severe dementia by 2007 (Knapp and Prince, 2007), rising to 101,978 in 2013 (Prince et al, 2014). The majority of people with severe dementia are likely to live in some form of care home in the UK, although this may change in future as care is reshaped, emphasising care at home in community settings (Scottish Government and Convention of Scottish Local Authorities, 2013). A recent UK report suggests 311,730 people with dementia live in care homes (Prince et al, 2014), of these 48% have dementia, with the highest rate in Scotland (65%) (Centre for Policy on Ageing, 2012). In Scotland diagnostic rates for dementia are growing in the community setting. In care homes rates are rising, within 911 care homes for older people, 52% of residents had a formal diagnosis of dementia in 2013, compared to 29% in 2003 (Information Services Division, 2013). Yet there is some evidence that this is an underestimate of those still undiagnosed and a survey in care homes in one Scottish city found a prevalence of approximately 90% (Lithgow, Jackson and Browne, 2012). Within care homes in the UK, length of stay is considered to be relatively stable with one third of people living in a care home for more than three years, with two years median length of stay; unchanged for the last ten years (Information Services Division, 2013). Stability in length of stay is also reflected in the BUPA profile of residents for 2012 in their homes in the UK, Australia, New Zealand and Spain, which showed no change to the average of 20 months since 2009 (Centre for Policy on Ageing, 2012). The current drive to maintain people in their own home may gradually change these statistics, yet the person with severe dementia, no matter the setting of care, will continue to require high levels of support. These high numbers of people with severe dementia living in care homes do not necessarily express confidence in the experience of care. A recent Alzheimer’s Society report identified low expectations expressed by the public about quality of care home life, suggesting that 70% of people would be afraid to move to a care home. In the same survey 28% of family members
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of people with dementia living in care homes considered quality of life there as poor (Alzheimer’s Society, 2013). Despite efforts to improve quality in care homes, using regulation and inspection, by the Care Quality Commission (England), the Social Services Inspectorate (Wales), the Regulations and Quality Improvement Authority (Northern Ireland) and the Care Inspectorate (Scotland), reports suggest this process is not entirely successful. This system of regulation has been described as set up to fail, using consumerist and normative standards and processes that lack a focus on individual needs (Kennedy, 2014). Negativity about severe dementia can result in therapeutic nihilism that can influence quality of life for the person and those who care for them (Alzheimer’s Disease International, 2012). Stigma about care homes is increased by the belief that care of the person with dementia is low skilled and less attractive to practitioners and research funders (Bamford, HolleyMoore and Watson, 2014). Despite this long term, negative situation in care settings, life is slowly improving for people who are being diagnosed with dementia. There is rising political and personal awareness of needs with more families having one or more members develop this condition. However the severe stage of dementia is probably one of the underrepresented aspects of the condition in policy, education and research. 1.3 Quality of Life in Severe Dementia Quality of life is a complex concept and will be explored in more detail within a review of the literature in Chapter Two. However, the person with dementia should expect to experience a good quality of life throughout each stage of the condition (Nuffield Council on Bioethics, 2009). Yet it has been suggested during the most severe stage, the care provided does not reflect potential for well-being and a good quality of life (Small, Froggatt and Downs, 2007). Quality of life is closely linked with the impact of other people and the context of care. As the person reaches the severe stage they will require all activities of living to be supported to a considerable degree by family and staff, often in formal care settings. The increased complexity created by involvement of others in care must be considered in any exploration of
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quality of life for the person with severe dementia and brings unique ethical issues (Burns and Winblad, 2006). Much of the current research focus in dementia is on the early and middle stages of the condition. In the early stages of dementia studies are located around diagnosis, medical treatment and risk assessment (Moyle and Muirfield, 2013). In the middle period, psychological and behavioural symptoms are of interest, together with the distress, not only for the person, but also particularly for families and caregivers. Research about severe dementia is sparse, not only reflecting the general lack of representativeness found in policy, but also a result of the challenges in research with the person not able to communicate verbally. An exception to this paucity of research, are studies exploring palliative care approaches to dementia. Dementia is a life limiting condition and the person at the severe stage may be considered close to death, yet there is an emerging agenda of living well with dementia. These two perspectives are not mutually exclusive and the continuum of dementia will include the need to support the person to live and die well (Kydd and Sharp, 2015). A palliative care approach has been advocated as appropriate at any stage of dementia (Van der Steen et al, 2014). Yet healthcare professionals are not able to reach a consensus on the time point when this approach becomes appropriate (van Riet Paap et al, 2015). While it can be difficult to argue with this palliative care approach, Shega and Sachs (2010) have suggested an alternative supportive care model involving treatment or palliation. Alongside these, person centred care continues to flourish (Kitwood, 1997), as does the relationship focussed SENSES framework of Nolan et al (2006). While all of these models and philosophies have commonalities and differences, all have goals reflecting quality of life. Yet all have limits and an integrated model of care has also been suggested, particularly for dementia care to focus on living well (Small, Froggatt and Downs, 2007). Accordingly, this principle of living well with dementia is central to this thesis with an unarguable relevance to quality of life. The person at the severe stage of dementia can continue to live for some time, may have long term conditions but is not necessarily experiencing symptom burden and therefore the
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quality of that life may be different from the person who is dying (The World Health Organization, 2012). Developing an understanding of the experience of the person with severe dementia is the beginning of understanding how any such difference may be perceived. 1.4 Aims and Objectives of the Study The aim of this study is to develop an understanding of quality of life for the person with severe dementia living in a care home setting. As this person is unable to provide information using language, this understanding will be developed using multiple perspectives. This includes observation of the person with severe dementia, the perspectives of family and staff and a range of documents and artefacts within the context of care. I have used a qualitative collective case study approach to examine the concept of quality of life, as an instrumental concept within the context of severe dementia (Stake, 2010). Research Aim: To explore the experience and perceptions of quality of life of the person with severe dementia living in a care home, using a collective case study approach. Research Objectives:
To develop an understanding of what might influence quality of life for the person with severe dementia living in a care home.
To observe the responses, behaviours and reactions of the person with severe dementia to their daily life in a care home.
To explore the perspectives of close family and staff about the person’s quality of life.
To examine how routinely gathered records documents, care records, rating scales and the environment reflect quality of life perspectives.
1.4 Structure of the Thesis In Chapter One, I reflected on my personal and professional interest and motivation to study this topic. I provide an overview of the concerns about quality of life and severe dementia that underpin this study. In presenting the aims and objectives for this study, I have identified the use of a case study 7
approach to overcome some of the difficulties of research with the person who has severe dementia. Chapter Two begins with an overview of the literature related to quality of life in severe dementia, exploring four key themes: the lack of definition and consensus about the concepts of quality of life and severe dementia; the dominance of normative approaches together with the methods and perspectives supporting data collection. Then I examine the subjective experience of quality of life for the person with severe dementia. This led me to identify that there was potential for a study placing the person with severe dementia at the heart of a case study where a deeper understanding of quality of life might be sought. Within Chapter Three, I explore the philosophical, ethical, theoretical and methodological considerations for this study. Using the quality of life framework described by Lawton (1991), I elaborate and interrogate this approach, using the theory of the situated embodied agent offered by Hughes (2011). I frame these within the qualitative collective case study approach based on the work of Stake (2005). Chapter Four includes ethical considerations and processes for the identification of participants and gaining consent. I then outline and evaluate the methods of data collection, analysis and reporting. These include nonparticipant observation, semi-structured interviews and the use of documents and artefacts. The analytic approach for each individual case study and the subsequent cross case analysis is described. Chapter Five allows me to present my findings with case descriptions of each of the six people with severe dementia. Pseudonyms using key motifs from their life and personal narratives informed the choice of names for the six people with dementia. These were Mrs Flower, Mrs Gardener, Mr Artist, Mrs Walker, Mrs Musician and Mrs Cook. Using Lawton’s (1994) theory to support a first stage analysis, I then moved to a second stage using elaborative codes to assimilate the philosophical perspective of the situated embodied agent (Hughes, 2011). Findings are synthesised in a cross case analysis, resulting in five themes reflecting the experience and perspectives of quality of life for participants with severe dementia.
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In Chapter Six I begin by identifying the key assertions derived from this study before reflecting on the merits and limitations of this work. I then examine these assertions in depth and consideration is given to how these might contribute to a deeper applied understanding of quality of life in severe dementia. I close by proposing recommendations and considerations for research, practice, education and policy.
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Chapter Two: Review of the Literature 2.1 Introduction The literature review presented in this chapter shows how this study is situated within research about quality of life in severe dementia. This chapter includes a critically exploration of the strength of the evidence base underpinning quality of life in dementia care and in particular the research approaches that have been used. Attention is afforded to understanding how the concepts of severe dementia and quality of life are described and applied within studies. The challenges associated with research investigating quality of life for people with severe dementia are explained and analysed. This review commences with an overview of the search strategy and concludes with a summary of the key findings from this review that have shaped this thesis. 2.2 Search Strategy In this review of the literature I draw on guidance from Stake who while attending to parameters around dates, language and methods, encourages understanding of what he terms “nearby studies” (Stake, 2010:112). These provide a particular perspective to increase understanding about the topic under consideration, indicating that not all studies carry equal weight or importance when providing insight into a topic. Therefore, while emphasising those studies of most value in deepening my understanding, I remain aware of the wider literature on this topic. These nearby studies are presented after a review of the predominant normative approaches and some of the wider literature. These contain concepts more closely related to this topic including studies of emotional response, awareness and the continuing importance of the body and the self in the person with severe dementia. These studies are key to becoming sensitised to the study of quality of life at this stage of dementia. I chose parameters of dates for the search from 1990 to 2013, after a brief review of the literature revealed few quality of life studies about dementia before 1990. Those from 1990-2000 are also somewhat meagre in number,
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but some of these early studies have interesting perspectives, as this period was coincident with the changing culture of dementia reflected in the work of Kitwood (1997). In the course of the study, and after I had completed data collection, I continued to examine and review relevant studies from 2013 to the present and these are used to enrich the discussion of my findings. I chose English language literature for this review, although some papers were sourced from countries beyond the UK and I remain aware that circumstances may be influenced by different health and care provision. A comprehensive electronic search involved databases including the Cochrane Library, Cinahl, Medline, Psychinfo and Proquest. I also searched ethos index to theses and Google Scholar. I regularly reviewed key journals, such as Dementia, Journal of Gerontological Nursing and Aging and Mental Health. I received alerts from journals such as Health and Quality of Life Outcomes and databases such as Google Scholar. In addition to this electronic search, I reviewed the reference lists from relevant papers for potentially useful sources. In order to expand my knowledge base on the topic, I also explored the issues around quality of life in dementia in the grey literature, including the few textbooks available about this stage of dementia (Burns and Winblad, 2006; Kovach, 1997; Volicer and Bloom-Charrette, 1999). Being aware of the challenges in the lack of consensus of terms used for this period I selected the key words ‘severe dementia’ and ‘Alzheimer’s disease’. Variants of the term severe dementia such as ‘advanced dementia’ and ‘late stage dementia’ were used together with ‘quality of life’. Boolean operators ‘or’ and ‘and’ were used to combine and differentiate key concepts and terms. In total, 769 papers were returned in this initial search. By reviewing titles and abstracts, these were reduced by excluding drug-based trials, or those which focussed on particular issues such as behaviour, where quality of life was mentioned only as a concept but not included in the major subjects or key words. Duplicates were also removed, leaving 210 papers. This large numbers of studies are reflective of the increase in the use of the term quality of life in relation to dementia, particularly in the earlier stages of the condition.
I reviewed titles; abstracts and key subject words and
removed those related to quality of life in the earlier stages of dementia or
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reporting single interventions not directly related to severe dementia. The papers central to this review are divided between 12 studies with a focus on quality of life in people with severe dementia, a term differently defined, and 20 studies where the focus was on quality of life on the continuum of dementia where there was inclusion of some participants with severe dementia. These are reviewed below taking Stake’s (2010) approach into account where emphasis is on developing greater insight into the issues and refining what should be studied. Two critical appraisal tools, one for quantitative and one for qualitative studies were used to evaluate the quality and credibility of the literature (Burns and Grove, 2011). Mixed methods studies were appraised using a specific appraisal tool for this purpose developed by Long et al (2002). This review has identified studies ranging from the quantitative paradigm to small-scale qualitative single case studies. These are almost all challenged by a diverse definition of both severe dementia and quality of life. Given the lack of opportunity to communicate using language in severe dementia there is a dearth of studies about the experience from the person’s perspective. 2.3 Severe Dementia and Quality of Life People who have severe dementia are not homogeneous and have the potential to experience a good quality of life (Hoe, Cooper and Livingston, 2013). I therefore begin this review with an overview of the terms ‘severe dementia’ and ‘quality of life’ used in this study and how these have been recognised, defined and described in the literature. As both of these constructs lack consensus some light needs to be shed on these at this early stage. I will focus on papers where terms have been more explicitly examined, rather than the many studies where this lack of consensus has been simply noted but not discussed. The European Dementia Consensus Group (EDCON) sought to explore definitions of the term severe dementia and identified these were inadequate, in part due to the variability of terminology and the inconsistent application of terms (Byrne et al, 2008). Terms include severe dementia (Burns and Winblad, 2006) advanced dementia (Long, 2009) late-stage
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dementia (Kovach, 1997) final, or end stage dementia (Moyle and Murfield, 2013). This lack of agreement has challenged the critical comparison of relevant studies. The concept of quality of life in dementia is also problematic, lacking clarity and consensus. Quality of life is generally described as multidimensional and likely to include physical, psychological and social domains but is also explained as a vague and tenuous term (Thompson and Kingston, 2004). There have been efforts to address this vagueness with a growing body of research examining the concept of quality of life in the early and middle stages of dementia (Burns and Winblad, 2006). However there is a scarcity of research related to the severe stage of dementia, despite the number of years the person may spend at this stage (Reisberg et al, 2006). 2.4 Dialogues about Severe Dementia Dementia as a construct has been a subject of a number of debates. There continue to be questions about whether or not dementia is a disease or an inevitable consequence of ageing (Whitehouse and George, 2008), although the World Health Organization (2012) clearly identifies dementia as a disease, not part of the normal ageing process. Additionally, Zeilig (2013) argues that dementia and old age as social constructions and the biomedical model and cultural ways of expressing and portraying dementia have either reinforced or challenged the way society perceives this condition. Other concerns are raised about the basis for the diagnosis of dementia, raising questions as a result of the extensive Nun Study, casting doubt on some of the neurological aspects claimed as diagnostic in the dementias (Snowdon et al 1997; Snowdon 2003). Concerns have also been expressed about the dominance of the medical model of dementia in the seminal work by Lyman (1989) reflected in the efforts to move to a person centred ethos by others, including Kitwood (1997). Despite concerns raised about medicalisation, diagnosis, definitions and the effect of ageing, among those who challenge the result of the label of ‘dementia’, there is an agreement that this is a biomedical disease with multiple causes and linked to ageing (George et al, 2012). As this disease
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progresses some people reach the stage termed severe. This has been described by Saxton and Boller (2006:43) as “a stage of profound cognitive and functional decline”, where neuropsychiatric sequelae may occur. These can include hallucinations, delusions, depression, anxiety, aggression and vocalisation such as screaming and shouting (Voisin and Vellas, 2009). Cognition and behaviour will markedly deteriorate and the person becomes increasingly dependent on their caregivers to meet all of their needs (Long, 2009). Due to this extreme dependency the person is likely to become resident in a care facility of some form and more than 60% of people with dementia will die in a care setting, although not all will reach the stage of severe dementia (Alzheimer’s Association, 2009). One important reason to clarify the definition of severe dementia is that there are a considerable number of people who reach this stage but little agreement about the figures. Herrmann and Gauthier (2008) identified that up to a third of people with dementia will reach the severe stage, Koopmans et al (2003), in a Dutch study, found 14.2% of people reach the severe stage. Nilsson, Gustafson and Hultberg (2012) found that survival in dementia was one third of that in an average population, with increasing age the main predictor of longer survival time. Survival from the onset of dementia has been reported as 4.6 years for women and 4.1 years for men (Nilsson, Gustafson and Hultberg, 2012), with a median survival range of 4.5 years (Xie, Brayne and Matthews, 2008). It is suggested that this disparity in reported survival times may result from the lack of a robust definition and reflects the use of incidence statistics. Brodaty, Seeher and Gibson (2012) indicate that the range of survival from diagnosis can last from 1.1 to 8.5 years. This period of survival may in future be ameliorated or reduced if interventions and treatments are developed. However, the individual who has reached the stage of severe dementia, family and caregivers will continue to benefit from the outcomes of evidence informed understanding of their needs, care and support that might enhance quality of life.
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2.4.1 The ‘Staging’ of Severe Dementia As dementia advances there are changes in functioning, cognition, behaviour and affect, leading to an increasing need for care by others (Moyle and Murfield, 2013). Dementia is often described in a series of stages, or periods, described as mild, moderate and severe or early, middle and late stage. The influence of research into medicines and treatments is considered to have led to the practice of staging of the course of dementia in an effort to construct normative and measurable values. While useful for medical treatment and research, this can also have merits in other interventions and may be useful in providing appropriate guidance for effective care and treatment. In severe dementia this staging has been examined within the EDCON consensus in an effort to reach some agreement about how this period might be defined (Bryne et al, 2008). Identifying that the cognitive domain dominated definitions, this group developed a consensus that included physical, social and cultural factors, agreeing that a single measure would not capture the experience of this stage (Bryne et al, 2008). However there are some measures not explored within the EDCON consensus that have been developed to stage Alzheimer’s disease. These scales respect this consensus and include the Global Deterioration Scale (GDS) (Reisberg et al, 1982) and Functional Assessment Staging (FAST) scales (Reisberg, 1988). The Global Deterioration Scale describes seven stages, where stage 6 is described as moderately severe and stage 7 as severe dementia. The FAST scale provides more comprehensive description and extends the descriptions of stage 6, which is grouped into stages 6a to 6e, and stage seven is divided into stage 7a-7f. The Clinical Dementia Rating scale (Hughes et al, 1982) is also widely used in research and identifies stages 0-3, with 3 demoting severe dementia, also using measures of functional and cognitive domains. Despite these measure there is a persistently normative approach to staging of dementia, criticised as not fully realising the psychosocial and individual impact of the progression of dementia on the person (Kitwood, 1997). Keady and Nolan (1994) challenged this as a biomedical paradigm and developed a model based on the experience of the person with dementia. Despite this effort to move away from the biomedical model, however, this
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progress through dementia is still described in stages, here called Slipping, Suspecting, Covering up, Revealing, Confirming, Maximising, Disorganisation, Decline and Death, reflecting the same deteriorating progression (Keady and Nolan, 1994). The process of staging consistently reveals a set of terms that are mainly negative and based on progressive decrements. The use of these terms can increase feelings of hopelessness for the person with dementia, family and caregivers and are unhelpful where the person does not conform to these predetermined stages. For the person with dementia these expected decrements could be overwhelming, while for some family and supporters there may be reassurance and improved understanding in having a normative measure of these periods of change. This may allow family members to make sense of the responses and behaviours of the person with dementia and as the disease progresses adjust caregiving strategies to meet the person’s needs. The individualised and person centred approach underpinning much of the person centred philosophy of dementia care, conflict with the concept of staging. There is a considerable challenge when these stages are applied to an individual with attributes, personality, a life narrative and a complex range of physical, sensory, emotional and cognitive abilities as well as deficits. Changes within and outside body and mind are set within a complex context of people, places and culture. The process of staging, while useful in framing concerns and suggesting interventions, is less so when applied to an individual. Additionally, the lack of consensus about the definition of severe dementia, despite the term being used in medicine and research, suggests that the staging of dementia will continue to be an art or a convenience rather than a scientific measure. The term severe dementia has been used here as a convenience in order to explain succinctly the presentation of this group of people but I remain aware of the negative connotations aligned with the term. To differentiate between the stages of dementia, as defined in these research studies, from that used in this thesis, operational terms will be applied. Where the term severe, or advanced, or late stage dementia is contained within the literature, the
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authors’ original terms will be adopted. When severe dementia is referred to in the text as defined for this thesis, as stage 7a-f of the FAST scale (Reisberg, 1988), this will be expressed in a motif of ‘severe dementia (FAST 7)’. 2.5 Interrogating Quality of Life Interrogating the key concept of quality of life has similar challenges. Standard definitions emphasise the subjective experience of quality of life, exemplified by the World Health Organization (WHOQOL Group, 1995), framing quality of life as embedded in an individual’s perception and personal expectations. However, there is less certainty in definitions of quality of life for the person with dementia. Some agreement is found in the principle that quality of life has complex multidimensional aspects (Bond, 1999; Lawton, 1997; Rabins and Black, 2007). Yet in contrast to this holistic approach many studies focus on a specific aspect, for example affect or mood (Albert et al, 1996; Brod et al, 1999). Brod et al (1999) adds a sense of belonging and enjoyment and Logsden et al (2002) includes physical health and relationships. While there is a range of domains identified as part of the construct, broader and inclusive definitions are less certain. This may be a result of blurring of boundaries when multiple domains are included and then framed within the impact of dementia. This narrow focus on particular domains is generally found where there is a need to operationalise this concept. Using a more inclusive definition leads to experiential and individual concepts that are elusive and less explored, particularly as dementia progresses to the severe stage. While there have been few attempts to develop a consensus in defining quality of life in dementia there has been an influential conceptual framework defined by Lawton as “the multidimensional evaluation, by both intrapersonal and social-normative criteria, of the person-environment system of an individual” (Lawton, 1991:6). He argued that quality of life has both subjective and objective aspects. The subjective perception of the person about life within the culture and value system, in which they live, is affected by the complex interpersonal and social structure surrounding them. The objective aspect of quality of life can include the person’s environment,
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physical and mental health, social relations and possessions (Netuveli and Blane, 2008). Volicer et al (1999) have developed a model of well-being in advanced dementia although this was limited to affective domains; this has proved too narrow for examining the inclusive concept of quality of life. Ettema et al (2005) suggest a model introducing the concept of adaptation by the person with dementia. Building on the work of Lawton (1995) and introducing the concept of adaptation to the course of the condition, this is perhaps more appropriate for the person in the earlier stages of dementia. However, Ettema et al (2005) suggests that observation of the person in the advanced stages can elicit the drive for adaptation from behavioural responses. This model is less well developed for the person with severe dementia, but future exploration may prove fruitful. 2.5.1 Seeking Consensus about Quality of Life This discussion about quality of life is further exacerbated by the confusion that may arise in using terms such as well-being. Dodge et al (2012) suggest that using the terms quality of life and well-being interchangeably makes conceptualising both terms more difficult, yet this is a useful concept in efforts to move away from the medicalisation of quality of life. The concept of well-being is best known in dementia care as developed and operationalised by Kitwood and Bredin (1992). They developed a list of key indicators to identify well and ill being in the person with dementia, although neither term is clearly defined (Baldwin and Capstick, 2007). Dodge et al (2012) identify indicators of pleasant and unpleasant affect and central to the concept of well-being but with a third interrelated component of satisfaction with life, introducing a cognitive domain not included in the Kitwood and Bredin (1992) work. Burgener, Twigg and Popovich (2005) Kolanowski, Hoffman and Hofer, (2007) and Lawton (1994) suggest that well-being is only one aspect of quality of life for the person with dementia and while important these concepts are not synonymous. Health related quality of life (HRQL) is a key term in the quantitative literature and used to develop a more robust approach to measures and
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outcomes (Sloane et al, 2005). HRQL is used to measure outcomes of health related interventions, however, while these are well developed they may not include other aspects of importance such as the environmental, aesthetic or spiritual facets of the person’s life (Banerjee et al, 2009). These are less useful in care settings where more complex social, cultural, environmental and interpersonal factors may influence outcomes. Further development of a disease focused quality of life perspective has been used to address some of the research challenges of data collection from the person who is affected by dementia (Sloane et al, 2005). These measures attempt to address some of the impact of the condition on the person and others, yet fails to take into account individual responses and reactions. This concern has commonality with a range of other groups, as in studies with people who are experiencing autism (Burgess and Gutstein, 2007), stroke and aphasia (Hilari et al, 2012) or traumatic brain injury, (Steadman-Pare et al, 2001). These express similar concerns about lack of consensus in conceptualising quality of life, the use of disease specific measures and attempts to operationalize the concept using domains rather than an holistic approach. These tensions about the construct will be found throughout the review but are reflective of the individual and multidimensional considerations of the concept of quality of life. 2.6 Normative Measures of Quality of Life in Severe Dementia It is clear that there are tensions between the understanding of quality of life as an individual experience and the normative approach of much of the extant literature. This normative focus has driven the development and validation of measures and rating scales (Bouman et al, 2011; Ettema et al, 2007). These quantitative studies, seeking measurable outcomes, have selected domains or approaches in order to operationalise the concept of quality of life. While reductionist, some of these studies have proved useful to illuminate the concept and raise issues that might be important in the maintenance or improvement of quality of life for the person with severe dementia.
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These normative approaches to measuring quality of life will be interrogated here by exploring how these have been developed (Ready and Ott, 2003; Thompson and Kingston, 2004), the challenges of measurement (Moyle and Murfield, 2013) and the value of measures to the study of the concept of quality of life (Banerjee et al 2009; Thompson and Kingston, 2004). Some of these measures have been developed to determine the outcome of interventions (Martin-Cook, 2005; Robert et al, 2010), while others endeavour to isolate specific factors that might have an impact on quality of life (Beerens, et al, 2013). Further studies have attempted to chart the progress of quality of life throughout the condition to develop an understanding of possible changes in quality of life over time or to compare different stages. (Selwood, Thorgrimsen and Orrell, 2005). While the development of normative measures has been driven by efforts to show improved outcomes in care and treatment, Rabins and Black (2007) describe quality of life as a ‘fuzzy’ term where achieving positive psychometric properties does not mean that a measure can capture this construct. 2.6.1 Measuring Quality of Life There are a range of measuring tools that focus on quality of life in dementia, derived mainly from studies with people who are in the early stages of the condition (Brod et al, 1999; Logsden et al, 1999; Thorgrimsen et al, 2003). Studies of quality of life in the early stages of dementia have continued to proliferate, encouraged by the relatively recent drive to improve rates of diagnosis and support, framed in the dementia strategies and action plans in the UK (Department of Health, 2009; The Scottish Government, 2010a; The Scottish Government, 2013-16; The Welsh Government, 2011). In contrast, Moyle and Murfield (2013) found few standardised measures available for the person with severe dementia and these were used infrequently in research studies. To examine those measures commonly available and considered applicable to the person with severe dementia, original papers and generic reviews of measures of quality of life in dementia were consulted. Eight commonly used measures identified for the person with severe dementia are outlined in figure 1.
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Figure 1: Commonly Used Measures
Measure
Format and content
Target group
Activity and Affect Indicators of
Proxy rated interview
Mild to severe dementia
Quality of Life. (Albert et al, 1996)
Activity indicators rated over a week and affect indicators over two weeks
Dementia Care Mapping (DCM)
Observer rated
Moderate to severe dementia
(Bradford Dementia Group, 1997)
Well-being versus ill-being is rated on an ordinal scale.
In care settings
Alzheimer Disease Related Quality of Proxy rated interview.
Mild to severe dementia
Life (ADRQL).
Indicators across five domains: Social interaction,
In long term care settings
(Rabins et al, 1999)
Awareness of Self, Feelings and Mood, Enjoyment of Activities and Response to Surroundings measured on a 1-10 scale.
Quality of life in late-stage dementia
Proxy rated
Severe dementia
(QUALID) scale.
Observational instrument that measures 11 behaviours
In long term care
(Weiner et al, 2000)
indicating activity and emotional state. Completed after seven days of observation. Rated on a five point Likert scale
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Psychological well-being in
Observer rated.
cognitively impaired persons. (PWB-
11 item scale that measures positive and negative affect
CIP).
and behaviours that indicate engagement
Mild to severe
(Burgener, Twigg and Popovich, 2005) DEMQol-Proxy.
Proxy rated.
All stages of dementia
(Smith et al, 2007)
Five domains include Daily activities, Health and well-
Any setting
being, Cognitive functioning, Social relationships and Self-concept. QUALIDEM
Proxy rated.
Mild to very severe dementia
(Ettema et al, 2007)
Frequency of behaviours occurring over the previous
In long term care settings
two weeks The Vienna List
Proxy rated
(Porzsolt et al, 2004)
Observer rated behaviour in five domains including
Severe dementia
Communication, Negative Affect, Bodily contact, Aggression and Mobility
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These eight measures displayed were developed from a range of sources; most frequently based on expert knowledge (Activity and Affect Indicators of Quality of Life Scale, DCM, PWB-CIP, QUALID and The Vienna List). Some involve both experts and caregivers (ADRQL) but only two included some consultation with people who had dementia and this only happened in the early development of these scales (DEMQoL-Proxy, QUALIDEM). Other measures have been developed mainly from expert opinion and rarely involved the person with dementia. Lawton’s (1994) conceptual framework underpins most of these measures (ADRQL, The Activity and Affect Indicators of Quality of Life, QUALID, PWB-CIP). The DEMQoL-Proxy has a health related framework. DCM has a conceptual basis in the psychosocial theory of personhood (Kitwood, 1997). The QUALIDEM is based on an adaption–coping theoretical framework based on the work of Lawton (1994). The Vienna List (Porzsolt et al, 2004) does not discuss the underpinning framework but is derived from electronic observations by clinicians of the behaviours of people with severe dementia in a hospital ward over a period of one year. It appears that Lawton’s theory has had the greatest influence on most of these measures but there are clear gaps in how this underpinning theory has been embedded. 2.6.2 Effectiveness of Measures Despite the emphasis on a multidimensional approach to studies of quality of life (Beerens et al, 2013; Bond, 1999; Lawton, 1997) most of these measures have been developed using pre-selected domains identified as relevant to quality of life. These include well-being (PWB-CIP), well-being and ill-being (DCM), affect and activity (The Activity and Affect Indicators of Quality of Life Scale, QUALID). The ADRQL, The Vienna List, DemQol-Proxy and QUALIDEM include more comprehensive and multidimensional aspects of quality of life. However all these measures vary in the domains selected and some have differing theoretical perspectives underpinning the measure, making any comparison of studies using different tools implausible. Even the more extensive measures are challenged by Scholzel-Dorenbos et al, (2007)
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who suggests that these need to be augmented by other scales as they do not stand alone as a measure of quality of life. Reliability in most of the scales was reported to be good with test retest measured in most reports (Activity and Affect Indicators of Quality of Life, DCM, ADRQL, PWB-CIP, DEMQoL-Proxy). However, all had similar threats to reliability with few people with severe dementia included and most involving a mixed group of participants at various stages of dementia. Only two measures (QUALID, The Vienna List) defined participants as having severe dementia, but the inclusion criteria differed in each study. The methods involved in collecting data for these measures lacks rigour, for example retrospective reporting used for observation rating scales (QUALID, QUALIDEM) involves staff remembering behaviour over a period of time. Koopmans et al (2009) suggest this increases the risk of observer bias and often reflects the opinion of a single observer. Validity was measured against other quality of life scores in the DEMQolProxy with the QoL-AD and in the DCM, where the study describes a generic paper and pencil measure of quality of life was used, but no other detail was offered. Others were measured against the Mini Mental State Examination (M.M.S.E.) (Folstein, Folstein and McHugh, 1975) or other ratings of dementia severity (Activity and Affect Indicators of Quality of Life, ADRQL, The Vienna List, QUALID) or with other rating scales measuring depression, behavioural disturbance or dependency (PWB-CIP, QUALID, The Vienna List, ADRQL). Moyle and Murfield (2013) identified that the small sample of participants with severe dementia included in the QUALIDEM studies did not allow assessment of reliability or validity to be established. Therefore the psychometric data for these commonly used measures tends to focus on reliability and in particular internal consistency, although the focus is on testretest reliability rather than inter-rater reliability. In addition, most focus on content validity with little on the responsiveness of the measures. The lack of consistent operational definitions of the stage of dementia and small numbers of people with severe dementia participating in studies leads to a cautious recommendation about the use of these measures for this stage of dementia (Moyle and Murfield, 2013). A review by Banarjee et al (2009)
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indicated that the development of further measures should not continue until the current measures were subjected to more rigorous psychometric testing. Studies using these measures are both lacking in number and design and few focus on the person with severe dementia so any outcomes are conflicting for a number of reasons. Firstly, there is the challenge of factors that are interrelated and cannot be independently measured, such as cognitive function and the person’s ability to carry out activities of living (Wetzels et al, 2010). Secondly, there is divergence in the relationships between cognitive function and quality of life as reported by self-report and proxy rating (Beer et al, 2010; Hoe et al, 2006). Additionally, several of these studies have measured associations between depression and quality of life, using scales such as the MMSE to define severe dementia, which has recognised floor effects particularly at this stage (Folstein, Folstein and McHugh, 1975). Other scales used, such as the Cornell scale (Alexopoulos et al, 1988) for depression in advanced dementia, also rely on a proxy being able to recognise particular emotional and cognitive states and is considered to lack sensitivity for the person with severe dementia (Barca et al, 2011). 2.6.3 Concerns About a Normative Approach Comparing studies using these normative measures and methods is challenging, as domains selected in these studies vary considerably, they have different scoring systems and data is collected in different ways from different groups (Scholzel-Dorenbos et al, 2007). Despite this continued tension between normative measures and the subjective experience of quality of life, there remains some value in this normative approach, including reporting on outcomes of psychosocial and medical interventions (Banerjee et al, 2009; Clare et al, 2013; Hoe et al, 2005). When accessing the subjective experience of people with severe dementia (FAST 7) is no longer possible, further development of objective measures may still make some contribution. A challenge of normative studies is reliance on limited data sources and numerical measures. Depending on a single data source has been blamed for holding back a genuine understanding of the experience of the person
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(Phinney, 2008). Lawton (1997) asserts that a single dimension of quality of life does not reflect the experience of the individual and that all relevant dimensions should be included. Despite question about the normative approach, Scholzel-Dorenbos et al (2007) and Banerjee et al (2009) have advocated that quality of life measures should be given high priority when researching strategies to improve the care or treatment of the person with dementia. This understandable drive to find ways to measure the outcomes of care and treatment has resulted in a reductionist approach using measures that look at aspects or domains of quality of life through a limited lens. This complex mix of aetiologies and pathologies found in the older person with severe dementia, combined with the individual experience of the person in the context in which they live, provides enormous methodological challenges (Stephan and Brayne, 2008). To address this, Sloane et al (2005) suggest that in contrast to the normative approach, multiple methods should be used to understand the complexity of the experience for the person with dementia, and that individual assessments should be developed for quality of life based on the person’s values and life experience. This is a key concern in building the concept of living well with dementia (Wolverson, Clarke and Moniz-Cook, 2010). Despite this general acceptance that quality of life is a protean concept experienced differently by each individual with dementia there is a continuing aspiration to develop measuring tools (Robert et al, 2010). This desire has been driven by the demand to have robust and stage specific measures of outcomes for psychosocial and medical interventions, to assist in assessments of place and quality of care and to provide a baseline to measure improvements in quality of life over time and place. The search for measures in severe dementia has been sporadic and challenged by the subtle changes and reduced responses in participants. There has been limited research interest thus far in this stage of dementia in general with the focus on efforts to produce normative measures of quality of life that cannot reflect the complexity of severe dementia.
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2.7 Methods Used to Understand Quality of Life Self-report is considered optimal as a method of data collection for quality of life studies (Clare et al, 2008; Crespo, Hornillos and Mar Gomez, 2013a). However, as dementia advances causing diminishing recall, poor perception of time, fading insight and limitations in communication, this confounds the opportunity for eliciting information from the person (Banerjee et al, 2009; Moyle and Murfield, 2013; Ready and Ott, 2003). While some efforts have been made to increase opportunities for the person with severe dementia to self-report, (Hoe et al, 2005; Kane et al, 2003), most studies use proxy and observation based methods to collect data (Banerjee et al, 2009). Rabins and Black (2007) have proposed that where the person does not understand the construct under study this precludes the use of self-report. This is modified by Thorgrimson et al (2003), who indicates that all changes caused by dementia contribute to the person’s reality and does not make his or her contribution any less important. In order to examine this further Hoe et al (2005) challenged previous studies, where self-report was only used with people in the mild to moderate stages of dementia, by successfully including people who had an MMSE score of 3 and above. However, this assumed the convention that MMSE scores below 10 are considered to indicate severe dementia and the study did not include the person who was nonverbal (Bryne et al, 2008; Voisin and Vellas, 2009). When the person with severe dementia is no longer able to speak there is as yet no novel ways of eliciting data. Alternatives such as pictorial prompts such as ‘Talking Mats’, while shown to be effective for many people with dementia, were used without success in the non-verbal person with severe dementia (Murphy, Gray and Cox, 2007). No other novel approach has been devised or tested although Curyto, Van Haitsma and Vriesman (2008) have suggested feedback approaches worn on the body may have something to offer as an alternative or an adjunct to observation. Currently it is clear that for the person with severe dementia (FAST 7), studies increasingly depend on the views of others involved in their life, using methods such as proxy reports and observations (Ettema et al, 2007; Weiner et al, 2000). There are concerns about the credibility of these methods of data collection and the
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congruence between the perspectives of others and that of the person with dementia. Proxy reports are usually elicited from a family member, caregiver or practitioner. Information from the perspectives of the other people involved in the care of the person with dementia is valued (Moyle and Murfield, 2013). Yet these reports must be used with caution as the person who is the proxy may differ in how they perceive and interpret the person’s behaviour and responses. The influence of personal beliefs, values and attitudes may affect the proxy, who may compare the life of the person with dementia negatively in relation to how they knew them before (Moyle and Murfield, 2013). A proxy report may compare the person’s life with others in similar or different circumstances. Overreliance on the reports of others could lead to quality of life being inaccurately defined as poor (Hughes and Baldwin, 2006). Studies of family members providing proxy reports show this disparity at all stages of dementia. At the early stages family and the person with dementia show differences in how they rate the person’s quality of life, with family rating this at a lower level (Weyerer and Schaufele, 2003). Rosenberg, Mielke and Lyketsos (2005) found that up to a third of family caregiver reports were biased by the perceived burden of care. Conde-Sala et al, (2013) adds that this is more likely when the person being cared for is in the early stages. While Hoe et al (2005) found no association between family caregiver psychological distress and proxy reports on quality of life in the later stages, Kolanowski Hoffman and Hofer, (2007) found a 40% to 60% of variance between self and proxy reports of positive and negative emotion in the person with moderate to severe dementia. It is suggested that as dementia progresses there is a greater difference in perspectives (Conde-Sala et al, 2013; Sheehan et al 2012). Crespo, Hornillos and Mar Gomez (2013a) reported that proxies, both family and staff members, provided lower quality of life scores for the group of people in the study in the advanced stage of dementia. These discrepancies in reporting between the person with dementia and family members occur throughout the course of the condition. In the earlier stages of dementia it may be the person is less aware of the difficulties they
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experience and may report their quality of life at a higher level or that others may be influenced by a diagnosis of dementia to report a lower quality of life. Graske et al (2012) opines that even when the person has severe impairments this may be the result of the ‘disability paradox’ where those whose life looks externally poor, report a good quality of life in contrast to those around them (Albrecht and Devlieger, 1999). Not only are there differences in how family and the person with dementia perceive quality of life, there is a suggestion that there are also differences about what each consider significant. Droes et al (2006) compared the views of people with mild to moderately severe dementia, family members and caregivers within day care centres and care homes. She found clear variances in the influencing factors of quality of life each group identified. When care staff provide proxy reports, limitations may arise from the attitudes and values of staff, their knowledge of the person and confidence in reporting and the choice of staff member. They may also be influenced by their own lack of knowledge and confidence about caring for the person. Winzelberg et al (2005) surveyed a group of 143 nursing assistants and found that their attitude about dementia and their confidence in their self-efficacy to address the fundamental care needs of residents affected the quality of life ratings they attributed to the person. Graske et al (2012) found that the person with dementia consistently rated their quality of life higher than a staff member but agreement was significantly better when the primary nurse was the proxy reporter. This suggests that a staff member who knows the person well may provide more reliable reports (Winzelberg et al, 2005). In addition to proxy reporting, observation methods have been used to collect data about quality of life. Curyto, Van Haitsma and Vriesman (2008) assert that while observation is a more objective method than proxy reporting but more time consuming and expensive. Conversely they also suggest that concerns are expressed about the quality of observation in data collection, including method, focus and timing of observations (Curyto, Van Haitsma and Vriesman, 2008). Where staff members are carrying out
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observation, it is important that they have been providing direct care to the person to fully understand reactions and responses (Hoe et al, 2006). Direct observation measures have been developed for the later stages of dementia and most widely used is Dementia Care Mapping (DCM) (Bradford Dementia Group, 1997). This method was developed to observe the activity and interaction of the person with dementia and staff in care settings that might indicate well-being or ill-being. Observers or ‘mappers’ for Dementia Care Mapping are trained to empathise with the person with dementia and code behaviours in a way that is sympathetic. There are a number of studies about this approach and it is perceived as a positive link between research and practice as it is both an evaluative instrument and a tool for practice development (Brooker, 2005). One of the main limitations of Dementia Care Mapping is that it does not consider the experience of family or staff members. The focus on the well-being or ill-being of the person is focussed mainly on interactions and could cause staff to feel they are being blamed for care that is not of sufficient quality. This has been recognised by the development of the Bradford Well-being Profile, by adopting a more neutral tone and changing terms to positive and negative indicators, however, reliability and validity is not considered robust and numerical scoring no longer used (Bradford Dementia Group, 2007). The Positive Response Schedule (Perrin, 1997) measures well-being in severe dementia but is limited in examining quality of life and intended only for periods of activity and engagement rather than the continuous experience of the person. Measures have been also developed for specific behaviours associated with poor quality of life for example agitation, with the Agitation BehaviourMapping Instrument (Cohen-Mansfield. Marx and Werner, 1992) and the Cohen-Mansfield Agitation Inventory (Cohen-Mansfield, 1997); psychotic symptoms and agitated behaviour with the BEHAVE-AD (Reisberg, Auer and Monteiro, 1997); and a range of neuropsychiatric sequelae, such as hallucinations
and
delusions,
with
the
Neuropsychiatric
Inventory
(Cummings al, 1994). Examining specific behaviours can be clouded by the difficulty in discerning the person’s internal state, as it is possible that behaviour identified in these studies may result from pain, discomfort,
30
anxiety, hunger or anger. Specific intervention studies may be more usefully served by focussing on the outcome of specific interventions, for example the use of analgesia as an intervention may allow pain behaviour to be identified and outcomes measured. However, behaviour expressed by the person with severe dementia can be a response to the situation at the time or related to the person’s previous personality and attributes (Curyto, Van Haitsma and Vriesman, 2008). There is no definitive method of identifying inner states in the person with severe dementia (FAST 7) and as facial expression becomes less mobile and neutral, observation as a method can be less effective. Positive responses are particularly difficult to access, as these produce less obvious behavioural identifiers than negative reactions (Kolanowski Hoffman and Hofer, 2007; Lawton, Van Haitsma and Klapper, 1996). In examining these methods of collecting data on quality of life, the perspective of the person providing information is paramount. Each person’s perspective has limitations, and the family member, staff and the person with dementia will experience and perceive quality of life differently. Therefore bringing these perspectives together in a study could be used to interrogate the findings and result in a deeper understanding of the concept. 2.8 Factors Influencing Quality of Life in Severe Dementia Progressing from the development of measuring tools, other studies focus on examining specific factors that might influence, or have a specific impact on quality of life. There is a lack of consensus in these studies, where a wide range of factors has been examined. Banarjee et al (2009) Wetzels et al (2010) and Zimmerman et al (2005) found no association, between sociodemographic characteristics and quality of life. Other studies identify factors such as behavioural disturbance, level of dependency for care, psychoactive medication and dementia severity as attendant to a lower quality of life for the person with dementia (Ballard et al 2001; Banerjee et al, 2006; Hoe et al, 2009; Logsdon et al, 2002; Missotten et al 2007). Links have been identified between quality of life and cognitive severity and quality of life and major depression (Banerjee et al, 2009). Being dependent in activities of living and poor cognitive function were related to diminished quality of life (Barca et al 2011).
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While Chung (2004) in an exploration of the impact of meaningful activity of well-being, makes connections between reduced activity and poorer quality of life. Depressive symptoms have been associated with reduced quality of life in mild to moderate dementia (Hoe et al, 2006; Selwood, Thorgrimsen and Orrell, 2005). This may be result from preserved insight in the person in the earlier stages and may experience depression as a result, whereas depression is less likely to be reported in proxy reports for the person with severe dementia (Wetzels, 2010). Proxies may not recognise symptoms of depression in severe dementia or not expect the person to experience depression at this stage. Apart from a study by Wetzels et al (2010) there is little reference to the colinearity of factors such as depression and increasing dependency, where it is clear that it is not always easy to distinguish one from the other, as the presenting behaviours and responses could be caused by either or both states. Psychoactive medication has also been implicated in reduced quality of life (Ballard et al, 2001; Wetzels et al, 2010) and this has led to a drive to reduce prescribing (Banerjee, 2009). However, despite identifying a link between these medications and reduced quality of life, Ballard (2009) in a later commentary on his own study, identified that while the use of psychoactive medication appeared to be associated with reduced quality of life, the distressing behaviours that initiated the treatment produced no such association (Ballard, 2009). This lack of consistency led him to insist that there should be a careful evaluation of individual experiences and what might impact on each individual. Perceptions of family, staff and researchers can influence the factors identified as important to quality of life. Garcia et al (2012) carried out a multicentre study asking family and staff what factors might influence disruptive behaviour and quality of life. Involving a self selected purposive sample of staff and family from eight care units, a nominal group technique was used to identify weighted and ranked factors. While these showed some variation, family and staff reported the most important factors as the staff/resident ratio, noisy environments and lack of consistency in staffing. In contrast, Ducharme and Geldmacher (2011) found that family members were
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concerned mainly about support for activities of living, well-being and medical care, although the setting of an acute clinic setting may have influenced responses. Chung (2004) linked activity and well-being using Dementia Care Mapping in a mixed group of people with dementia living in two care homes. Although reduced activity was associated with lower levels of well-being in severe dementia the link to ill-being was more tenuous and the study did not include some important variables including pain, ill health, impact of others and the environment. Influencing factors explored in these studies and associated with poorer quality of life, such as depression, dependency in care; lack of activity and disturbed behaviour produce expected results, that any of these would cause distress in any group of people. There is considerable variation in these studies about which factors are considered to reduce quality of life. Few studies focus on severe dementia, most were carried out with people living at home, in an earlier stage of dementia and using varied measures both of quality of life, depression, dependency and cognitive functioning. Those studies based in care settings were dependant on data from proxy reports or observation. Despite the practical wisdom that might lead to associate such challenges in health and care with a poorer quality of life, comparisons of the findings of these studies must be interpreted with caution. 2.10 Quality of Life on the Continuum of Dementia The paucity in research is also evident in studies exploring what might enhance or diminish quality of life at different stages of dementia (Banarjee et al, 2009; Beerens et al, 2013). Longitudinal studies have been advocated to identify factors that might impact on quality of life for the person over the course of the condition (Beerens et al, 2013). Albert et al (2001) followed a cohort of participants with moderate to severe dementia, most for up to five years, reporting some reduction in quality of life over time. The strongest impact factors found for lower quality of life scores were lack of positive affect, low level of activity and being confined to home. Proxy reports identified a reduced quality of life as dementia advances. In contrast, the Laser-AD study, over 54 months, unexpectedly found that quality of life did
33
not decrease as dementia progressed (Hoe, Cooper and Livingston, 2013). The period of 12 years between reporting of these studies may reflect changing attitudes or care experiences. In other studies, Selwood, Thorgrimsen and Orrell, (2005) in a year-long follow up study found no correlation between quality of life and reducing cognition. While Lyketsos et al (2003) using proxy reports, found a small deterioration of quality of life over a two-year long study, yet while a significant finding, over half the participants showed no change in quality of life over this period. In comparison to these long-term studies, a cross sectional design, involving care home staff, reported lower quality of life scores for a group of people with very severe dementia than at any other stage (Missotten et al, 2008). There is little consistency in findings examining quality of life at different stages of dementia or those that compare quality of life as dementia progresses. Cross sectional studies are limited by the challenge of comparing groups, as those people in the early stages of dementia are more likely to be at home and able to self-report, while those in the severe stage are most often living in care settings and reports are more likely to be from proxies. Longitudinal studies, while subject to the same concerns, may have the potential to provide more robust individual and group outcomes, where the same group of participants are studied over time. 2.11 Quality of Care and Quality of Life Quality of care is an influencing factor identified in the literature, a concept imagined in various ways and influenced by a range of perspectives. This concept can be culturally driven, affected by legislation and resources or viewed through an interpersonal lens. When understood from a health care perspective, some of the concerns are clinically effectiveness, safety and a positive patient experience and includes issues such as access, capacity and equity (Leatherman and Sutherland, 2008). Health and social care standards for the individual with dementia include promoting choice, support, encouraging independence and maintaining function (National Institute for Care Excellence (NICE), 2010). Within care home settings quality of care is
34
expected to focus on dignity, privacy, choice, safety, realising potential and equality and diversity (The Scottish Government, 2007). Despite these multiple efforts to set standards of quality of care, there is no guarantee that an individual supported by these tenets will experience a good quality of life (Moyle et al, 2007). Quality of care is not always associated with quality of life and even in settings where the care is excellent there are residents who have a poor quality of life and vice versa (Edelman et al, 2005). Kane (2001) suggests that it is still unclear what expectations there are about quality of life in care settings. In essence, care standards provide a normative approach to quality through guidance and inspection but can only be part of the process that influences the individual’s quality of life. Despite this caveat, Golant (2003) insists that the place of care matters to quality of life, alluding to the ecological theory of ageing, which emphasises the importance of the interaction that occurs between the person and the environment or culture of care (Lawton and Nahemow, 1973). Person centred care has been identified as a core factor of good quality of care in dementia, reinforcing a sense of dignity and increasing well-being in the person with dementia (Kitwood, 1997). This precept is founded on respect and a belief that, no matter how disabled, the person with dementia can live well (Epp, 2003). Although enshrined in much of the policy and guidance as key to quality of care, person centred care is generally not defined (Epp, 2003). A range of care factors, including staff approaches, individualised care, providing opportunities for meaningful activity and transforming leadership and management have been included in definitions of person centred care and this variety challenges any firm conclusions about the outcome of the approach (Brownie and Nancarrow, 2013). A systematic review of the efficacy of person centred care found limited extant studies and these did not clearly show benefit from using a person centred approach (Olsson et al 2012). A more recent cluster-randomised controlled trial using the acronym ‘VIPS’, which is a person centred model of care and Dementia Care Mapping, identified some positive impact on quality of life in the intervention group but no significant effect was found of the person centred approach (Rokstad et al, 2013). Congruent with the dearth of studies
35
available, most do not explicitly focus on the person with severe dementia and future research is needed with a clearly defined person centred approach for this population (Edvardsson, Winblad and Sandman, 2008). The term person centred care lacks clear understanding and perhaps is overused in describing a range of frameworks and models of care, as a report suggests the term has “lost much of its original value as a guiding principle” (Nuffield Council on Bioethics, 2009:40). Further there are a range of models that focus on ‘centred’ care, as in person centred or relationship centred and in a review by Hughes, Bamford and May (2008) little difference is found among these other than that they are contextually useful with very similar themes but differing in focus for different contexts. While different in application, most ‘centred’ frameworks contain similar dimensions and domains. Innovative initiatives underpinned by person centred and relationship focussed approaches for older people in care homes include My Home Life in the UK and the Eden Alternative in America. While subject to local evaluations, there is no research available on the outcomes of the My Home Life project as yet. One small study of the Eden Alternative model by Bergman-Evans (2004) found a reduction in boredom and helplessness but no change in a sense of loneliness. While a quasi-experimental small-scale study by Parsons (2004) found boredom, helplessness and loneliness all changed for the better in the Eden Alternative home. These creative approaches are complex cultural change strategies and research aiming to illuminate change for individual residents may prove challenging as a result. It is not clear to what extent living in some form of supported care away from home may affect quality of life (Nikmat, Hawthorne and Al-Mashoor, 2011). A care home setting may include negative environmental influences, including noise, activity and having to experience personal care by others resulting in negative affective and behavioural responses (Kolanowski, Hoffman and Hofer (2007). The care home is affected by the prevailing culture, organisation of care and public standards set to clarify roles and responsibilities and identify service improvements. In Scotland, this is regulated by the Care Inspectorate under the aegis of the Scottish
36
Government (2010b) to ensure safety, quality, standards and delivery of care. This has been defined as consumer driven; person centred care and is shared by care systems in England, Wales, Northern Ireland and Australia (O’Dwyer, 2013). In addition to the lack of evidence for person centred care; this consumer-based emphasis on autonomy and choice may not be optimal for the person with severe dementia. The person who is no longer able to make such choices can also be disadvantaged at the macro level of care as a result of a focus on independence and the rights of the consumer. Increasingly places of care have included Special Care Units or Special Care Facilities (Reimer et al, 2004). These have been promoted to improve the care and quality of life for the person with dementia, varying from specialised separate units to specialist activities provided for part of the day within a general care setting (Weyerer, Schaufele and Hendlmeier, 2010). The success of these units has not been proven as the population of Special Care Units and the Special Care Facilities differs from other care settings. The person cared for in Special Care Units are more likely to have poorer communication skills and greater cognitive impairment than the population of nursing homes, who are more likely to be physically frail (Buchanan et al, 2005). Weyerer, Schaufele and Hendlmeier, (2010) found significant differences between the SCU and residential home groups. While the Special Care Unit group had better mobility, they had more falls and experienced more severe degrees of dementia. Crespo, Hornillos and Mar Gomez (2013b) concluded that participants in the Special Care Units scored lower on a quality of life measure than participants of standard units. While Reimer et al (2004) reported higher scores on for agitation in the Special Care Facilities group, in contrast a study by Wolf-Ostermann et al (2012) found little difference between groups of participants, with no significant influences from sociodemographic characteristics, degree of dementia severity or dependency. However most of these studies did not find that the Special Care Units had an impact on quality of life (Buchanan et al, 2005; Crespo, Hornillos and Mar Gomez, 2013b; Weyerer, Schaufele and Hendlmeier, 2010; Wolf-Ostermann et al, 2012). Only Reimer et al (2004) identified that quality of life was the same or better in Special Care Facilities than traditional units, citing
37
improved affect and ability to perform activities of living. All the Special Care Units and Special Care Facilities in these studies had different staff issues, resources and environments. The country of origin for these studies, the USA, Germany and Spain, where care provision differs, could also influence these results. It is suggested that the complex interrelationship and colinearity of factors that affect quality of life will militate against the likelihood of isolating any single factor that might impact on quality of life in these settings. 2.12 Experiencing Quality of Life in Severe Dementia The challenge of examining the perspective of the person with severe dementia has been identified as early as Lawton (1994), who considered that no approach had proved successful. It is considered impossible to know how another person feels, particularly at the extreme end stage of dementia (Hughes, 2011). However, accepting this does not remove the obligation to continue to strive for that understanding. Remaining aware of the challenges already identified in using other methods, this section will include studies that attempt to hear the voice of the person in the later stages of dementia retaining some verbal communication and the family and practitioners who care for them. In addition, attributes remaining available within the person with severe dementia (FAST 7), including emotions, awareness and experiencing the world through the body, will be explored. Accessing these remaining attributes may offer a deeper understanding of the person’s experience. These studies support the belief that the ability to feel, think and experience through the body are available to the person who is at the severe stage of dementia (Magai et al, 1996; Clare et al, 2012; Kontos, 2004). Interrogating these moves towards a more centred view of the person with severe dementia and is congruent with the influential work on the importance of the self and selfhood epitomised by the theoretical studies of Kitwood (1997), Post (2000), Sabat (2001), and Hughes (2011). A small number of studies are available where the person with severe dementia is included, where experience is elicited through self report (Clare et al, 2008; Bryne-Davis, Bennet and Wilcock, 2006; Moyle et al, 2011; Sorrell, 2006). Moving away from normative and quantitative measures
38
similar challenges remain, related to defining the stage of dementia, conceptualising quality of life, accessing the experience of the person with severe dementia (FAST 7) and the appropriateness of data collection methods. Some of these qualitative studies attempt to include the views of the person with severe dementia, yet none focus exclusively on this period. Clare et al (2008) involved participants described as having moderate to severe dementia; Bryne-Davis, Bennett and Wilcock (2006) involved people experiencing mild to severe dementia and Cahill and Diaz-Ponce (2011) had three groupings of participants with mild, moderate and severe cognitive impairment. A further study by Moyle et al (2011) gave no indication of degree or staging of dementia but inclusion criteria included a diagnosis of dementia and living in a care home. One phenomenological study by Sorrell (2006) explored the perspectives family and professional carers of people with severe dementia. These studies aimed to understand experiences (Clare et al, 2008; Bryne-Davis, Bennet and Wilcock, 2006; Moyle et al, 2011; Sorrell, 2006) or explore differences in quality of life at each stage of the journey (Cahill and Diaz-Ponce, 2011). All of these studies used either semistructured interview schedules (Moyle et al, 2011; Cahill and Diaz-Ponce, 2011) unstructured interviews (Clare et al, 2008; Sorrell, 2006) or focus groups (Bryne-Davis, Bennett and Wilcock (2006). Small numbers of people with severe dementia were included, with sample sizes ranging from 12 to 40 participants. The lack of consensus about severe dementia was evident in these studies, severity of dementia was rated using tools such as the Clinical Dementia Rating Scale, where three denotes severe dementia (Bryne-Davis, Bennett and Wilcock, 2006); the MMSE where scores of less than 11 (Clare et al, 2008) or MMSE score of less than 10 (Cahill and Diaz-Ponce, 2011) or not defined (Moyle et al, 2011; Sorrel, 2006). While these studies focus on the experience of the person with dementia, including some family and staff perspectives, as in the quantitative literature the person with severe dementia (FAST 7) is generally not included (Cahill and Diaz-Ponce, 2011). Despite some limitations these studies produce some rich qualitative information about a seldom-heard group of people and some findings could contribute to a better understanding of the person who has severe dementia
39
(FAST 7). However, this literature is explored with caution, it is not assumed that the experiences of the person at an earlier stage will be the same as the person with severe dementia (FAST 7). It is clear there are differences in the responses and concerns of the participants at each stage of dementia (Cahill and Diaz-Ponce, 2011). In addition, Clare et al (2008) found limitations in findings when participants had lower scores on the MMSE, where the sparse and superficial content of their discourse gave little opportunity to explore how the person felt about situations. Conversely, Bryne-Davis, Bennett and Wilcock (2006) Clare et al (2008) and Moyle et al (2011) argue that the preferences and needs identified by the person with dementia in their studies could have been expressed by anyone. Yet there are implications in aligning findings to the person who is more severely impaired, as the more homogeneous the findings the greater likelihood that some of these may be more widely applicable. These include core themes about the importance of relationships with family, (Bryne-Davis, Bennett and Wilcock, 2006; BryneDavis, Bennett and Wilcock, 2006; Cahill and Diaz-Ponce, 2011; Clare et al, 2008; Moyle et al, 2011; Sorrell, 2006) staff interaction, (Cahill and DiazPonce, 2011; Moyle et al, 2013) the importance of small routine activities of life, (Clare et al, 2008; Moyle et al, 2011) the perceived loss of control, (Bryne-Davis, Bennett and Wilcock, 2006; Clare et al, 2008; Moyle et al, 2011) the importance of identify and life history, (Clare et al, 2008; Sorrell, 2006), feeling at home, (Cahill and Diaz-Ponce, 2011) and having meaningful activity (Cahill and Diaz-Ponce, 2011). Some of the implications for practice in these studies reflected the need to increase interaction (Cahill and Diaz-Ponce, 2011; Clare et al, 2008; Moyle, 2011; Sorrell, 2006), offer choices (Clare et al, 2008; Moyle, 2011), consider the person’s feelings (Clare et al, 2008; Sorrell, 2006), use life narratives (Cahill and Diaz-Ponce, 2011; Clare et al, 2008; Moyle et al 2011; Sorrell, 2006), provide meaningful activity and educate staff (Cahill and Diaz-Ponce, 2011; Clare et al, 2008). However Cahill and Diaz–Ponce (2011) identified that a greater understanding and focus on more severe dementia is required as they identified subtle differences in the intensity of different needs at different stages of dementia. While the findings of these studies could
40
therefore resonate with quality of life for the person with severe dementia, it is clear that these cannot simply be accepted without further exploration. 2.12.1 Emotion and Severe Dementia The ability to experience and express emotions is key to connecting with others and while this is affected, the person in the severe stage continues to experience these. Although cognition plays a role in our understanding of an emotional experience, reduced cognition does not eliminate emotion (Lazarus, 1982). Lazarus (1982) describes emotion as the anticipated or experienced outcome of the interaction between the person and the environment. Emotions are generated through bodily responses and the resulting changes in brain state and the cognitive aspects such as conscious awareness and verbal descriptions of emotional states are described as the “icing on the cake” (LeDoux, 1998:302). Therefore, in the most severe stage of dementia the person should still be able to experience and display emotion although modulated by a range of factors (Kolanowski Hoffman and Hofer, 2007). This includes the location of the neurological damage; while some homogeneity may be seen in Alzheimer’s disease, the person with other forms of dementia may experience emotion differently (Kumfor and Piguet, 2013). In addition, old age, medication and depression may also reduce the recognition and experience of emotion. Observed behaviours may not reflect internal status, as dementia progresses cues that identify emotional responses become understated and facial expressions of emotions become more difficult to discern, particularly when related to positive reactions. Moving beyond biological aspects there is also considerable impact from both interpersonal aspects and the environment. Guaita et al (2009) found that people with dementia could recognise and react to facial expressions of emotion in photographs of familiar staff members. By observing changes in posture or movement and verbal expression, the person was asked to identify emotions and reactions of another person captured on camera. Participants from each stage of dementia were recruited, of these 79 participants only three people, considered at the most severe stage of dementia, were unable to discern
41
emotion. However, it is suggested that this is more about an inability to communicate rather than recognition of emotion at this stage. Positive emotions were recognised more often by participants, yet reactions were noted in response to most of the facial expressions whether positive or negative. In the most severe stage of dementia it becomes increasingly difficult, but not impossible, to discern emotional responses. In a study with people who had advanced dementia, a complex set of stimulus presentations were carried out with 193 residents and positive responses were found to all stimuli (Cohen-Mansfield et al, 2012). However the most pleasurable response was to human interaction, followed by pets and music. Simple activities generated engagement but no evidence of pleasure and for the person with very severe dementia it became increasingly difficult to discern pleasure as a response. Similarly in a study of positive affect using body movement and facial expression in nursing home residents, responses such as interest and contentment were most frequently noted (Lawton, Van Haitsma and Klapper, 1996) Gaebler and Helmsley (1991) measured the emotional responses of a group of people with severe dementia using music as a stimulus and found that four out of six people studied showed behavioural change or a response by facial expression. Magai et al (1996) showed a preservation of emotion in a group of people with advanced dementia including expressions of anger and sadness. A later study in advanced dementia found links between the person’s pre-illness personality and emotional responses (Magai, 1997). Tappen et al (1997) Bayles et al (2000) and Haak, (2003) explored the communication ability of people in the advanced stages of dementia and found that they had a degree of residual language and could respond appropriately to some interactions from caregivers. However, increasing failure of speech in dementia can lead to lost opportunities for caregivers to sustain and maintain communication (Ellis and Astell, 2004). Therefore it is important to examine how contact, communication and recognition of emotional response could be made and how responses could be discerned (Ellis, 2009; Norberg, Melin and Asplund, 1986; Robert et al, 2010). These studies indicate that both positive and
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negative responses can be elicited from the person with severe dementia even though it is perceived to be difficult to discern emotion. There are expectations that further development of this area could encourage new ways of understanding in practice and care but this has not as yet been realised. 2.12.2 Awareness in Severe Dementia It may be that the person with severe dementia could be experiencing more than he or she is able to communicate (Norberg, Melin and Asplund, 1986). In a case study approach exploring the responses of two people with severe dementia to external stimulation, an idiosyncratic reaction was identified to music, touch and object presentation (Norberg Melin and Asplund, 1986). This suggests that it is important to identify the most effective approach for each individual by recognising cues from the person (Norberg Melin and Asplund, 1986). A small exploratory study explored how the person with dementia understood and responded to the nonverbal behaviour of others (Hubbard et al, 2002). The findings suggested that the person with dementia could respond to non-verbal behaviours, including touch or laughter. As dementia progresses it is suggested that lack of stimulation rather than lack of response causes the person to lose the ability to react to pleasurable events (Cohen Mansfield et al, 2012). Lack of interpersonal contact and noisy, unpredictable care environments may cause a degree of withdrawal from the person with severe dementia, leading others to assume a lack of awareness (Norberg, Melin and Asplund, 1986). The actions of caregivers and the environment of care can influence the extent to which the person with severe dementia is able to show awareness (Clare, 2010). A conceptual framework reflects the role of others in maintaining awareness in people with moderate to severe dementia as “the expression of awareness involves an interaction between the individual with severe dementia and the environmental context…. facilitated by a supportive context and by appropriately sensitive interaction” (Clare, 2010:30). In a study based on observational data from 40 participants with severe dementia Clare et al (2012) reported that it was possible to identify some awareness in
43
all the participants. This resulted in the development of an observational tool to measure awareness in people with severe dementia, AwareCare (Clare et al, 2012). Clare et al, (2012) has suggested that training staff to identify awareness in the person with severe dementia would encourage greater responsiveness to the person’s care needs. In a cluster, randomised trial in eight care homes, the Awarecare tool with staff training was provided to four intervention homes. Ratings of quality of life by family members showed improvement within these intervention homes (Clare et al. 2012). Further work with family members and care staff contributed to a model of awareness, particularly exploring the impact of others and the environment on the person with severe dementia (Quinn et al, 2013). While family members reported an ongoing emotional connection and actively sought signs of awareness, staff sought awareness from the person mainly within care work. Both identified that awareness in severe dementia is not static and levels can fluctuate, reflecting previous studies where concept of lucidity is outlined. Here the person with severe dementia, who is normally silent, says something meaningful to their current situation (Normann, Asplund and Norberg, 1998). Lucidity is also considered to be identifiable by meaningful gestures or body movements occurring unexpectedly (Hughes, 2011). This fluctuation in responsiveness or lucidity could also have an impact on how awareness is recognised and capitalised upon by others. These studies of awareness have not yet shown what impact this knowledge may have on quality of life for the person and care and treatment that might be provided has not been identified, developed or examined. Studies of awareness have been small scale and sporadic with the person who has severe dementia. Early work by Norberg, Melin and Asplund, (1986), identified that the person with severe dementia may be more aware than was believed but was not stimulated by others to respond. Later work Clare (2012) has identified the impact of others and the environment on the person’s perceived awareness and has shown that increasing education for family and staff may increase the recognition of awareness in the person. Clare (2010) concludes that there is a perceptual awareness that is detectable in the person with severe dementia. However, Cohen Mansfield et
44
al (2012) and Norberg, Melin and Asplund, 1986) argue that it is difficult to discern if the person’s responses and reactions are an awareness of the experience or are the result of a physiological response. Kontos (2004) suggests that it matters little if this is a physiological or sensory response and that it is no less valid than perceptual responses when considered as an expression of awareness. 2.12.3 Embodiment and Severe Dementia When language cannot meaningfully express how the person experiences quality of life, body and facial expressions become the focus of understanding needs and distress (Long, 2009). Kitwood (1997) advocated close attention to the physical needs of the person with dementia and the importance of the body in severe dementia is advanced through the work of Kontos (2004). Using the concept of embodiment to challenge assumptions about loss of the self as dementia advances, she explored this in an intensive ethnographic study (Kontos, 2004). Involving 13 participants with moderate to severe dementia in a care setting, over eight months, developing the concept of embodied selfhood. Linking awareness of surroundings, engagement and interaction that has meaning and agency she theorised that in the absence of words, the body of the person with severe dementia expresses and experiences selfhood and argues that this embodied self interacts with the world through the body (Kontos, 2004). Being purposeful even by moving away or smiling, involves agency, manifest in body actions. Having agency is described as someone who acts intentionally, within their worldview, rather than as a passive observer (Hughes, 2011). This agency through the body is perceived to be present below the level of cognition and is inherent in both the persons’ ability to express and connect through the physical body and also in acquired social behaviour. Kontos’ (2004) study is an exploration of the residual abilities of the person with severe dementia and a challenge to the cognitive model of dementia. While Kitwood (1997) drew attention to addressing the physical needs of the person, he did not include the body in his relational discussion of self and personhood. Kontos (2004) considers that these relational aspects are only part of selfhood and that the senses and
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functions of the body are key to recognising and understanding the person with severe dementia through habits, actions and gestures. To further this theory, a qualitative study with practitioners used focus groups to explore five vignettes drawn from a previous ethnographic study of embodiment (Kontos and Naglie, 2007). This study identified that practitioners must acknowledge that selfhood persists as dementia advances to facilitate sympathetic care and connection. A common bond is formed between the person with severe dementia and the practitioner as they shared the needs and expressions of the body. However, this requires imagination on the part of the practitioner to make this connection that could lead to better responses and improved care (Kontos and Naglie, 2007). This necessitates a deeper understanding and imagination on the part of the caregiver and more in depth knowledge of the person. Although this approach enriches understanding of the importance of the body in severe dementia it is clear that further exploration is required to identify the application and value of this concept of embodied selfhood to quality of life. Kontos (2004) asserts that the embodied behaviours of the person with severe dementia provide a more positive and robust means of discerning quality of life. Yet, observation of the person’s responses and behaviours has been identified as weak data, open to misinterpretation (Lawton, 1994). This weakness is also inherent in proxy reports by family and caregivers. These studies on emotion, awareness and embodiment all rest on the premise that if these remaining attributes of emotions, awareness and embodied selfhood were recognised by others, this would increase the scope for the caregiver to deepen understanding of the experience of the person with severe dementia. However, as yet studies are largely theoretical and have not moved beyond recognising possibilities, there is no clear way to help understand or make an impact on the person’s quality of life. 2.13 Key Findings from the Literature Review An examination of the literature reveals a dearth of research specifically addressing quality of life in severe dementia, with no studies about the period of severe dementia, defined for this study as FAST stage 7a-7e,
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affirming the aim of this exploratory study. In reviewing relevant literature it has become clear that there is a need for a deeper understanding of this complex phenomenon. This study addresses some of the concerns raised by this review by clearly identifying the singular stage of the person with severe dementia, supported by explicit theoretical assumptions about the concept of quality of life. This interrogation of relevant research has identified two main approaches to this concern, one normative the other ipsative. The dominant normative approach, using quantitative methods, has investigated factors and variables that might be relevant to quality of life or developed measures to identify outcomes of interventions. In contrast, an ipsative approach, using qualitative designs, has focussed on the experience of aspects related to quality of life for the individuals affected by dementia. This reflects the challenge of this multidimensionality of quality of life and the concept continues to remain elusive, poorly defined and understood. These studies have some commonalities in data collection methods and consider self-report from the person with dementia as the gold standard. However for the person with severe dementia the challenge of self-report leads to a dependence on proxy reporting and direct observation of behaviour. The small number of studies to include participants with severe dementia, experience challenges in data collection methods. Some studies have made recommendations about optimal study design, advocating inclusion of multiple methods of data collection in order to examine the concept from a number of perspectives (Sloane et al, 2005; Weyerer and Schaufele, 2003). It is suggested that an holistic research design should include the person with severe dementia and carers together with the person’s life narrative in a small scale study (Bond, 1999; Whitehouse. Patterson and Sami, 2003). A number of authors suggest a combination of methods including observation and reports from the family and caregivers (Curyto, Van Haitsma and Vriesman, 2008; Sloane et al, 2005). Russell and Middleton, 2008) insist that quality of life can only be understood from multiple perspectives and Lawton (1991) reinforces this approach used to confirm or disconfirm evidence from a range of sources. It is clear that a
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more inclusive design, both using a variety of methods and a range of sources is more likely to develop a deeper understanding of the concept of quality of life in severe dementia. Drawing on some of these recommendations the design for this study reflects an holistic approach, using multiple methods and sources to investigate this multidimensional experience. This approach is further developed and interrogated in the following chapters.
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Chapter Three: Theoretical and Methodological Perspectives. 3.1 Introduction In this chapter I discuss the theoretical and methodological underpinnings, together with the ethical considerations, that influence and shape this study. I commence with consideration of the person, focussing on severe dementia and the challenge of understanding quality of life for an individual who has severe cognitive and communicative changes that limit opportunity for selfrealisation.
The situated experience of life as a care home resident is
theoretically justified using the lens of the person, environment theory developed by Lawton (1994). By reviewing the situated embodied agent perspective of Hughes (2011) I consider how the social world might be created, co-created, and understood from the perspective of the individual, family and care home staff. I then explore and justify the use of Stake’s (1995, 2010) approach to qualitative case studies, positioned within social constructionism. I outline the elements of the case study approach alongside considerations of rigour. Finally, I reflect on the ethical considerations of research with this vulnerable group of people, and how I have addressed these considerations, mindful of theoretical and methodological perspectives. 3.2 Philosophical Perspectives It is clear from the literature review that there is a desire to understand more about quality of life in dementia. However there are inherent challenges when the person at the centre of the study is frail, old and unable to speak about their understanding of reality. I consider that that the person with severe dementia is able to experience a positive quality of life, despite the changes in the mind and body wrought by illness and old age, as a living human being, situated in the world and responsive to others and the environment. To support this contention, I explore philosophical assumptions that emphasise key aspects such as agency, embodiment, and relations with others, how the person is positioned and the environment. I have identified more than one philosophical approach to underpin this study, identifying with the view
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expressed by Hughes (2011) that no single approach can account for the complexities inherent in the life of the person with dementia. I have drawn on two complementary philosophical perspectives that will influence this study. Hughes (2011) and Lawton (1994) have emphasised aspects of the life of the person with severe dementia and these are interwoven to provide a deeper and richer perspective for this study. Together these encompass a view of the person in relation to others (Hughes, 2011) the context and environment (Lawton, 1994). Hughes (2011) emphasises the embodied and situational aspect of the person with dementia, Lawton (1994) the environmental and intrapersonal issues. Hughes (2011) explains the situated embodied agent view of the person with dementia as a perspective where the person can only be understood within the context in which they are situated. This is partly due to the human body, which places the person in a time, context and circumstance. The situated context includes the agency of the person who interacts with the environment and the surroundings in a human way. Agency is defined as the person acting and responding in their context that can be interpreted as human. This is perceived in the action of the body in response to others or in striving to achieve goals or maintain purpose and is considered to be reflective of the preservation of the sense of self (Sabat, 2001). Lawton’s theory of quality of life in dementia is firmly rooted in his own values about older people with dementia and the right to a positive environment (Lawton, 1994). While he shares the term agency with Hughes, he perceives it differently, as the person having agency in response to the environment in which he or she lives and expressed by striving to achieve maximum comfort. Lawton (1994) centres on the environment, including the built environment, as well as the capacity of the person with dementia to respond to that environment. While viewing dementia through different lenses, Hughes (2011) and Lawton (1994) share a view of the person with dementia as in need of greater understanding and respect as dementia progresses and the person’s needs change. These needs are perceived differently, as either maintaining the person with dementia in comfort (Lawton, 1994) or maximising their quality
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of care (Hughes, 2011). The person’s relationship with the place where he or she is living has not been fully explored by Hughes (2011). Comparably, Lawton’s (1994) theory does not explicitly examine the impact of others and the relational aspects of quality of life. Thus, while each of these philosophies has been useful in underpinning this study, neither is complete when placed in the context of the person with severe dementia. Where these concur however, is about the importance of exploring, examining and improving the quality of life for the person with dementia and is therefore sympathetic to the philosophical assumptions of this study. 3.2.1 Social Constructionism The study is located within social constructionist theory with the assumption that the participants’ worldview and the concept of quality of life are considered to be co-created within a context and setting. Within this context there are multiple constructions and multiple realities that create and cocreate understandings to form a shared assumption about reality (Denzin and Lincoln, 2005). Social constructionism provides a macro and micro perspective on the experience of dementia. Reflecting the macro level, an ethos of living well with dementia is spreading globally, based on the premise that dementia no longer means the end of the person’s active and useful life (World Health Organization, 2012). There is a shift in the public perception of dementia, at least towards the earlier stages of the condition and media has been part of that reconstruction. Meanwhile the growing user and carer movement have ensured that the voices of the person with dementia and carers are being heard. This positive image is at variance with media stories of deficiencies in care for the older person with dementia in care homes, hospitals and at home. Reports of poor care such as The Francis Report (Francis, 2013) and investigations into neglect and lack of knowledge in care; such as the case of Mrs V. (Mental Welfare Commission for Scotland, 2011) have continually reinforced the negative aspects of care and treatment for the most vulnerable in society. These socially constructed views reflect the multiple perspectives that create understanding of dementia. A social constructionist perspective of dementia is congruent with my assumptions and beliefs that there are multiple
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realities, which change in response to other people in any given context. Each person in the particular context has different experiences and values to bring to this co-created reality. At a micro level Delanty (2005) identifies the importance of studying how the individual constructs reality from the social context within which he or she is situated. While advocates of constructionism believe that language constitutes the person as a self-interpreting being, it is also suggested that the individual is culturally and historically situated and will experience the world from this perspective (Schwandt, 2003). In this worldview, knowledge has both affective and embodied aspects, in addition to cognitive attributes (Schwandt, 2003). This view is consonant with this study, as the person with dementia is included as a participant, despite the lack of cognitive ability they experience, as respect is shown for the contribution the person makes through embodied or emotional behaviour. These embodied and emotional aspects allow the person who has severe dementia to be part of that creation of reality, as he or she contributes to the limit of their individual capacity. Alternative theoretical frameworks have framed studies of the person in the later stages of dementia, particularly symbolic interactionism (Kelly, 2010; Smith et al, 2014). One of the merits of this approach is Snow’s (2001: 369) extension of Blumer’s (1962) original contention that people make sense of the world by interpretation; this includes the principle of ‘interactive determination’, which insists that individuals can only be fully understood in relation to one another. Symbolic interactionism is particularly relevant to the study of interactions, in understanding human behaviour and how the person understands the world (Patton 2002). This might be considered challenging here as the main participant with dementia has such limited ability to interact, at least verbally. Hubbard et al (2002), guided by a symbolic interactionism perspective explored how the person with advanced dementia interpreted nonverbal behaviour, however, these participants could speak and the interpretations were examined in relation to self-report. A symbolic interactionist perspective also identifies that collective behaviour leads to change; the participant with severe dementia is not able to act with others in understanding and leading change. Finally, within symbolic
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interactionism the meaning of a situation for the person is developed over time (Smith et al, 2014) and this requires the person with dementia to remember what has happened in past experiences. Holstein and Gubrium (2013) express concern about the conflation of social constructionism with symbolic interactionism even with a shared focus on social interaction. This shared concern has been likened to a kaleidoscope with myriad different views. While the lenses may be the same, a shift provides a different view of the world (Flick, 2007; Silverman, 2011). 3.2.2 Integrating Perspectives These philosophical and theoretical perspectives are now examined to seek congruence. The philosophical perspectives of Lawton (1997) and Hughes (2011) reflect a number of constructionist principles, as both views the person in terms of social and relational surroundings. Hughes (2011) is critical of the application of social constructionist theory to dementia, while accepting the social constructionist stance by Kitwood (1997), within his new culture of dementia care, and Sabat’s construct of selfhood (2001) has wrought positive changes in practice. Lawton’s early variable driven positivist approach provided the conceptual basis for a number of tools that endeavour to assess quality of life in dementia (Weismann and Moore, 2003). Yet Schwarz, (2003) has reviewed Lawton’s long career and posits that over time he moved philosophically from a positivist approach to social constructionism. Lawton increasingly recognised the multifaceted, socially constructed and experiential issues that influence quality of life and this heralded a move from quantitative methods to a predominantly qualitative and mixed method approach (Weisman and Moore, 2003). Therefore both of these perspectives resonate with social constructionist assumptions. 3.3 Case Study: Methodological Perspectives Beginning with the concern about the experience of quality of life of the person with severe dementia living in care home, I used my own practice, teaching and research knowledge. I turned to others who had experience of caring, family members and practitioners and from the words and writings of
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people in early stage dementia. This enquiry began with the central issue of quality of life in severe dementia and the study was framed around this (Miles, Huberman and Saldana, 2013; Stake, 2010). Having explored theoretical perspectives I sought those resonant with my values and beliefs to provide the basis for a rigorous and credible study (Houghton et al, 2013). I read and explored what was known and understood from the literature and other people who are experts in fields such as nursing, medicine and care. My research propositions developed from my synthesis of this rich store of knowledge. I now move to examine the methods and research designs that would help me understand these. The design and method for the study were chosen to address the central issue and consonant with the theoretical and philosophical underpinnings examined in this chapter 3.3.1 Qualitative Research As the experience of the person with severe dementia is seldom heard in the literature, I focussed on a range of qualitative approaches, which Stake (2010) has identified as most appropriate when the focus is on those who are disenfranchised or a minority. Silverman (2011) generally agrees that most qualitative research studies should be carried out with those who are disadvantaged or underrepresented. This description corresponds with the person with severe dementia as they live with severe disabilities, cognitive deterioration, and reduction in verbal communication in a closed environment that may not be of their choice. The circumstances of the person experiencing severe dementia are difficult for others to imagine and Coolican, (2004) suggests that qualitative case studies about specific life experiences situated in context, can add to knowledge and understanding. Flick (2007) elucidates the common features of qualitative research as being based in the natural world and explaining social phenomena using experiences of individuals or groups; analyzing interactions and discourses and using documents and artefacts. Stake (2010) suggests that the term qualitative implies reliance on understanding and perception by those people involved. He identifies key characteristics of a qualitative approach as interpretative, experiential, situational and personalistic. The focus must be
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on the meaning of human matters, holistic, contextual and working to understand those involved (Stake, 2010). This paradigm is in contrast to a positivist approach, which relies on measurements and statistical analysis (Stake, 2010). However this dichotomous approach to the paradigms is now considered unhelpful in most fields of study. Denzin and Lincoln (1998) expressed the view more than 15 years ago that rather than re-visit the traditional quantitative versus qualitative argument, the researcher should instead explore the lens through which the world is viewed. Munhall (2012) suggests that the vital aspect of research is the matching of the research questions and propositions with the methodology and methods that will answer or address these issues, increasing rigour. Therefore, the starting point of this study lies with the phenomenon or matter to be understood leading to the methodological approach. 3.3.2 Case Study Methodology Having explored the qualitative paradigm, I was drawn to the work of Stake, who talks about “studying how things work” within particular times, contexts and in relation to certain people (Stake, 2010:14). This resonated with my topic of quality of life for the person with severe dementia living in a care home, within parameters of time, place, setting and persons. Additionally case study method is used to examine a contemporary phenomenon and the person with severe dementia lives very much in the present, with little apparent knowledge of past or future. I considered this to be a consonant approach to the study of such a vulnerable group of people who are often described as living in the “here and now” (Kolanowski, Hoffman and Hofer, 2007: 20). Abma and Stake (2014) consider qualitative case study to be grounded in the real life of care settings. The case study approach has been used successfully in dementia research including with the person with dementia in primary care (Keady et al, 2004), issues around social inclusion and dementia (Bartlett, 2007) and activity in dementia (Wood, Womack and Hooper, 2009). Case study research is a well established and accepted research approach, described as giving voice to those whose experience is poorly understood (Hammersley and Gomm,
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2000). The detailed enquiry associated with the case study method has led to insights to initiate change in nursing practice in diverse areas of care such as coronary heart disease (Zucker, 2001), stroke care (Carlsson, Ehrenberg and Ehnfors, 2004) and self harm (MacAndrew and Warne, 2005). Further support comes from Hughes, who advocates a case-based approach to issues around dementia, including quality of life, in order to approach these inductively, “where the unique person is considered in his or her own context” (Hughes, 2011:251). This places the person with severe dementia at the heart of this study and therefore this casuistry, or case based reasoning not only underpins the research propositions, theoretical and ethical approach to this study but is sympathetic with the decision to use a qualitative case study approach. Accordingly I adopted an in depth collective case study design that allows a deeper perspective, both complex and bounded, organic and what Stake (2005:447) describes as “heavy with purpose and self”. After careful consideration, I rejected alternative methodologies such as phenomenology, grounded theory and ethnography. Phenomenological approaches are generally language based, focusing on a lived experience. Grounded theory does focus on a phenomenon, but seeks to build substantive theory, in addition to developing understanding, and is more useful for studies examining a phenomenon that changes over time (Merriam, 2009). While quality of life does indeed change I considered that this change process was not the main consideration. Instead I wished to develop a deeper understanding about the topic of study, within a particular time and setting. Case study research has often been subsumed into the larger methodological area of ethnography (Flick, 2007; Hentz, 2012). However, placing case study within ethnographic methodology is challenged by Yin, (2014) who clearly differentiates between the more focussed approach of case study with the investment of long periods in the field required in order to carry out ethnographic studies. Had ethnographic methodology been used for this study, the focus would have included the environment and culture of the care home setting. I concluded that using an ethnographic approach might have addressed an issue such as quality of care but not the phenomenon of
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quality of life. In contrast using a case study approach enabled the exploration and understanding of the experience and perceptions of quality of life of the person with dementia within the context of living in a care home, using a variety of data sources. 3.3.3 Stake’s Case Study Approach I explored two known proponents of the case study approach, Yin (2003, 2009, 2014) and Stake (1995, 2010), identifying commonalities and differences in their positions. I sought to identify which school of thought was sympathetic to the theoretical and philosophical assumptions of this study. While these two authors concur in the principles of case study, such as when to choose case study as an appropriate methodology and the importance of defining and bounding the case, their philosophical stance and means of addressing rigour diverge (Boblin et al, 2013). Yin (2009) while endeavouring to increase the reliability and validity of the approach, has framed his approach to case study within a semi positivist paradigm, encouraging the inclusion of conceptual frameworks and propositions that can be tested, using either a quantitative approach or mixed methods. Multiple case studies are viewed as repeated single experiments to address criticism of the case study approach, such as lack of scientific rigour and poor generalisability of findings (Crowe et al, 2011). Stake (1995, 2010), while endeavouring to ensure that case study design is equally robust, adopts a more constructivist and flexible approach using qualitative methods. Stake’s (1995, 2010) approach could be perceived as lacking the structure and focus on reliability, validity and generalisable results espoused by Yin (Boblin et al, 2013). However, as a qualitative researcher Stake (2010) addresses rigour and credibility using robust research design, theoretical sampling of cases, conceptual triangulation of data, researcher reflexivity, excellent reporting of the research process and clear presentation of data (Eisenhardt and Graebner, 2007). I concluded that while some of the pragmatic organisational aspects of Yin’s approach might be useful, Stake’s philosophical assumptions were consonant with my previously outlined perspectives and this would provide a more sympathetic approach to this study.
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3.4 Case Study Design A qualitative, instrumental, collective case study design was used and having examined the need for a qualitative study the remaining methodological choices are now described. An instrumental case study design was chosen to address the phenomenon of quality of life in severe dementia, in order to reframe the current understanding (Stake, 1995). The alternative intrinsic case study design centres on a single case, which is considered to be unusual or unique but this would not necessarily have explored quality of life, focussing instead on the single case (Stake, 1995). Using an instrumental design allows the particulars of an individual case to be understood but in the context of the phenomenon to be studied (Stake, 2005). To deepen my understanding I used a collective case study approach, mindful of Stake’s (2005) advice about using more than one case to intensify interpretation. Collective case studies also provide an opportunity to find unusual issues that might illustrate or illuminate concerns that could be overlooked (Simons, 2009). Stake (2005) suggests that between four and ten cases may reduce limitations in collective case study, while Yin (2014) suggests that two or three cases are appropriate, where the theoretical framework is straightforward, and five or more if the underpinning concepts are more elusive. I decided to seek up to six cases for this study and this decision was driven by concerns about the vulnerability of the participants and the need to make each case study time bound. Pragmatically, I was also aware of the availability of participants, time constraints and the challenge to the lone researcher of managing the extensive body of data created using a case study approach. 3.4.1 The Bounded Case Central to this approach is the case, which is formulated through a process that allows a complex phenomenon to be managed and studied using a range of methods (Sandelowski, 2011). A case may range from an individual to an organisation and becomes the unit of analysis. I began with the phenomenon of interest, quality of life for the person with severe dementia within a care
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home and placed this at the centre of the study by identifying the unit of analysis as the person with severe dementia. This unit of analysis creates the “bounded system” described by Stake (1995:2), who explains that this provides the understanding need from the study but is circumscribed to contain the form and amount of data collected. The unit of analysis of the person with severe dementia is then bounded in this study by place and time to form the case (Cresswell, 2013). These boundaries of place are set by the parameters of the care home as the person does not leave this setting and includes people, documents and artefacts. The time boundaries are provided by the limits set in the data collection period, that each case would last no more than six weeks. This also respected the vulnerability and fragility of the person at this stage of dementia. 3.4.2 Data Sources and Methods Within these place and time boundaries, I collected data from a range of sources (Stake, 2006), including the person with severe dementia, family and staff, documents, rating scales and artefacts. I sought information from the person with severe dementia directly, by observation, as it is worthwhile to question assumptions about the lack of information that might be collected from the person with severe dementia (Lawton, 1997). I interviewed the closest family and a staff member in each case to address the relational aspect of quality of life emphasised by Hughes (2011). The person with severe dementia continues to be part of relationships. Family may have more in depth knowledge of the person before they moved into care, but not have current information of day-to-day life. When memories of past life are lost in severe dementia the “small stories” become more important, brief fragments and interactions of daily life continue to contribute to their identity (Baldwin, 2006:223). Therefore, a staff member who cared for the person with severe dementia on a daily basis was a key informant for each case study. I sourced a range of other data, including routinely gathered written data about the person, behavioural rating scales completed by senior nursing staff and other artefacts and documents, selecting this variety in data sources to respect the
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intricacy and complexity of quality of life (O’Connor, Phinney and Hulko, 2009). As a lone researcher working within limited time constraints for each case study, I sought a theoretical framework to plan and structure data collection. Lawton’s (1997) theory of quality of life together with Hughes’ (2011) theory of the situated embodied agent guided the development of a data collection plan. Stake (2010) is clear that the boundaries set for a case study should set some limits on the data collected but be selective and have a “connoisseur’s appetite” for the best sources of data to understand the case rather than strive to collect as much data as possible (Stake, 1995:56). By using a collective case study design, I was aware that Miles, Huberman and Saldana (2013) suggest that this requires more structure than single case designs, advising focus and standardisation in methods. I developed a protocol for data collection setting out the data source; method of data collection and the chronological order data was collected for each case study. While the approach to case study developed by Yin (2014) was not congruent with this study, his pragmatic method of organising data proved a useful reference point for this protocol. The resulting data set for each case study was consistent in terms of sources, material and sequence. I remained aware that this structured approach had to be balanced with the intuitive and flexible method considered essential to the process of qualitative data collection (Stake, 2010). As in my choice of methodology, the phenomenon to be studied played a key role in deciding which data sources might be used (Stake 2005). These sources and the methods of data collection were derived from the phenomenon of quality of life and included both the setting which is consonant with Lawton’s theory (Lawton, 1994) and with the relationships that may be important to the phenomenon and the person being studied (Hughes, 2011). This framework for data collection reflects the five dimensions explored in case study research, psychological, spatial, cultural, social and historical (Hayes, 2000). This includes the experience of individual participants, relationships, the setting, the symbols and artefacts and related events that are happening now or have happened in the past.
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Using multiple methods of collecting data arguably increases the likelihood of producing a consistent and complete picture of the phenomenon under study, referred to as triangulation (Polit and Beck, 2008). Triangulation is seen as a process of confirming or interrogating data using other sources of information, although Flick (2007) suggests that this is more likely to produce additional meanings and further sources of investigation than confirm a single finding. However, perhaps the view of Coolican (2004) is more clear-cut, describing triangulation as a convergence of the findings, allowing a fuller picture of the phenomenon under study and increasing rigour Stake (2005) however, contends that social constructionism negates the notion of triangulation, if reality is continually constituted and re constituted then data cannot confirm other data. Rigour is addressed here using terms such as credibility, transferability, dependability and confirmability (Denzin and Lincoln, 1994). These will be addressed throughout the study and are evident in the detail provided about the design, the careful processes of data collection and the thorough approach to analysing and reporting this study. 3.5 The Researcher in Case Study Research. In designing this research study I was directed by my philosophical and theoretical perspectives and I have made my value base explicit. I have established my credibility as a researcher in terms of background, experience and qualifications considered by Shenton, (2004) as of equal importance to the use of any other method in qualitative research. Riege’s (2003) view from a constructivist perspective is that it is not appropriate to separate the researcher and participant and that much of the quality of information depends on interpersonal relations and interactions. Therefore study findings are considered to be co-created and the result of interaction between and among all those involved, including the researcher. This approach is in accord with the assumption that what is considered real is constructed by those people in the context, therefore the researcher, by being in the environment, may exert some influence on that construction of reality. I was aware of the importance of self-awareness and reflexivity throughout
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this study and in order to ensure my role was transparent and subject to clear oversight, I sought support and guidance from my supervisory team (Shenton, 2004). Regular discussion and debrief ensured that the experience of others helped me to explore ideas and ways forward and examine the p and philosophies that might have impinged on the credibility of the study (Shenton, 2004). 3.6 Analytic Plan One of the key hazards perennially noted in case study approaches is the volume of data to be collected; the process of data analysis is the least well developed aspect (Simons, 2009; Mills et al 2010, Yin, 2014). I have positioned my data analysis approach in the field oriented, naturalistic and social constructionist perspectives espoused by Stake (2010). While his comprehensive analytic approach for the single case presents methodological aspects of analysis, he also advocates that each researcher find a way to manage the data for his or her study. His guidance on collective case studies is based on multi-site studies and multiple researchers and does not readily harmonise with the collective case study used here. Conscious of these tensions, I have developed within the philosophical approach of Stake (1995, 2005, 2010) a pragmatic analytic design supported by the detailed guidance of Miles, Huberman and Saldana (2013) and Merriam (2009). These theoretical perspectives resonate with those of Stake (Yazan, 2015). Stake’s (2010) work provides the beliefs and values about the craft and Miles, Huberman and Saldana (2013) and Merriam (2009) introduce some pragmatic guidance on the analytic processes. 3.6.1 Individual Case Analysis I began the process of analysis by developing a record for each case reflecting the chronological sequence and following the order in which each piece of data was collected. All raw data was stored in this logical sequence, facilitating the editing process and allowing interative analytic notes to be added to the raw data while smoothing the process of locating information during analysis. This systematic approach also facilitated analyses of each individual case and across the collective cases (Merriam, 2009).
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Stake (2005) and Flick (2007) suggest consideration of an existing theoretical framework for case study where the central issue is clear, as in this instrumental case study. Miles, Huberman and Saldana (2013) clarify this by suggesting that this depends on whether the study is descriptive or confirmatory. However they are clear that this is not a dichotomy and a study can have both descriptive and confirmatory aspects, central at different times in the study. For this study, there is a theoretical framework available in Lawton’s (1997) work and yet this study is in essence descriptive, as the framework is not being tested. I appreciate that in viewing data through the lens of Lawton’s theory, developing codes within this framework, there may be a reduced awareness of some of the emic perspectives emerging from the data. Nonetheless, I found it difficult to reconcile this framework for data analysis with Stake’s (2010) ethos of interpretation from the data and found the process restrictive (Gillham, 2000; Simons, 2009). Therefore, retaining Lawton’s (1997) framework for first level analysis to sensitise me to the data, I then introduced the lens of Hughes (2011) and an iterative process of moving between the codes developed within the first level analysis to develop elaborative codes for a deeper interpretation of the data. I also used extant literature to consider rival explanations for the findings and themes emerging from the data, moving from an exploratory analysis in the early stages to a confirmatory approach as the analysis progressed (Miles, Huberman and Saldana, 2013). To develop my understanding of how to interpret the data, I returned to Stake who describes two main analytic techniques, direct interpretation and categorical aggregation (Stake, 2010). Direct interpretation is described as the instance or activity or response, where the researcher takes this apart and puts it back again more meaningfully (Stake, 2010). Simons (2009) describes interpretation as a highly intuitive process involving complete immersion in the data, reading and re-reading the material, listening repeatedly to recordings of interviews and writing and re-writing each case as a narrative. Analysis and interpretation are interactive and iterative through the whole process, involving a movement backwards and forwards
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through the data (Simons, 2009). This iteration is a key aspect of case study design, and increases credibility by in depth iteration (Crowe et al, 2011; Shenton, 2004). This approach was central to the analytical process, from direct interpretation of the data; categorical aggregations allowed a gradual accumulation of meanings to develop into categories or findings. These strategies are used together to search for meanings and patterns (Stake, 2010). I drew on Stake’s (2010) view of the analytic process as iterative and I moved back and forth through and between each piece of data and from codes to raw data and back. Stake (2010) indicates that the process of analysis and interpretation is about making sense of what is happening and this does not wait for formal data analysis, therefore also I used analytic notes during data collection to reflect and begin to interpret the data (Stake, 2010). These analytic notes included not also reflective comments, but theoretical perspectives and links from the literature that appeared to relate to the raw data. Miles, Huberman and Saldana (2013) call this analytic memoing, and these notes or memos became increasingly useful as I began to aggregate data to form findings and develop each case report. 3.6.2 Case Study Report Stake (1995) has identified three broad approaches to developing a case study report. Two of these are the biographical method and the researcher’s view of coming to know the case. Both focus on the development of the case over a lengthy period of time and would not support the time bound aspect of this study. I drew instead on his third approach, which examines components identified in the case one by one, building one upon the other, facilitated by my approach to storing the case record chronologically as each step of data collection was completed. Using direct interpretation and categorical aggregation techniques and analysing the data first through Lawton’s (1997) framework then iteratively reflected through the lens of Hughes (2011) findings were identified. Finding is a term consonant with Stake (1995), often viewed as synonymous with themes in qualitative research. These findings
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developed from the six in depth case reports and were then compared across all six cases in a process of cross case analysis. 3.6.3 Cross Case Analysis Cross case analysis compared findings from each of the six cases to examine commonalities and differences between and among them. A key dialectic within this study is what might be learned from the case study or the collective case studies, what might be particular to the case or cases and what might be generalised from these. On one hand there is Yin’s approach (Yin, 2014) suggesting that the selection of cases should initially be based on a likelihood of similar results. His post positivist perspective uses replication logic, where each case is discrete and analysed in its entirety but all the cases are then examined to allow replication, contrasts and extension to each other (Yin, 2014). This is supported by the use of an initial data analysis model to gradually transform the data to results that can be compared across the cases. This could be an attractive proposition when presenting a study where it is important to show findings can be generalised. However, the emphasis here is on examining the fine detail of each person’s experience and making the intricacies of a phenomenon visible, while recognising the heterogeneity of the experience of quality of life in severe dementia (O’Connor, Phinney and Hulko, 2009). Losing the complexity of meaning from individual cases when using a data analysis model is a risk in replication logic. Stake (2005) instead suggests it is possible to retain particular and general knowledge by recognising uniqueness of cases as well as commonalities. The collective case study therefore is an iterative approach, using more than one case to deepen understanding rather than generalise findings. I was conscious that too high a level of abstraction such as replication logic could risk reducing the strength and oversimplifying of the findings. This is directly opposed to Stake’s (1995) exhortation that the there is a need for case study researchers to maintain their view both on the individual case and the cross case findings without the need to generalise the findings. Generalisation is a key argument in case study research and the term is used differently. Gibbert, Ruigrok and Wicki (2008) suggest that the
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emphasis on trying to generalise can actually take the attention of the researcher away from the case itself. Riege (2003) is clear that instead the objective of case study method is to illuminate and develop understanding of the meaning of real life experience within current contexts, which may develop or expand existing theory. Stake (2010) adopts a different view about generalisation and considers instead that this might be understood better in reference to the reader of the study. This can show dependability and increase credibility in the findings when these resonate with the person who identifies this as reflecting their own experience and applies these to their own field. Gibbert, Ruigrok and Wicki (2008) strengthen this by indicating that case study is a useful method for generating and reflecting practice based knowledge and understanding. 3.7 Ethical Issues In Scottish law the person with severe dementia is unlikely to have capacity to give legally valid consent to research and an appointed welfare attorney will make all decisions for the person in relation to finance and welfare, including consent to research involvement. Ethical approval was therefore gained from the Scotland A Research Ethics Committee in line with the requirements of the Adults with Incapacity (Scotland) Act (Scottish Government, 2000) (Appendix 1). Permission was gained from the managers of the care home where the study was carried out (Appendix 2). In Europe, a deontological perspective guides the ethical approval process and requires the actions and processes of research must be robust (Haigh, 2008). This dominant framework uses a principalist approach (Beauchamp and Childress, 2013), focussing on the four ethical principles of autonomy, beneficence, non-maleficence and justice. (Harris, 2003) has argued that this principalist perspective is a starting point in the ethical reflections vital in making decisions but not sufficient to ensure this reflection is thorough and protective of the persons involved. As all four ethical principles cannot each have priority in all situations, it will be dependent on which principle is identifies as important at any given time (Campbell, 2005).
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In this study, for example, the principle of autonomy may not be the overriding consideration in the person with severe dementia. It could be argued that they are not autonomous if others make their decisions for them, as in proxy decisions, under the tenets of the Adults with Incapacity (Scotland) Act (Scottish Government, 2000). Therefore, where there is loss of capacity, autonomy may not be a useful principle. The principle of beneficence or doing good may be central here, however some research does not promise that ‘good’ for the person, rather it is hoped that the findings will do good for others in the future. If the focus is on non-maleficence and not doing harm, a person cannot always decide that no harm has been done. Even the principle of justice may not be central, as others in the home will have my presence imposed. Therefore principalism is useful but not sufficient in the ethical considerations for this study and ethical approval does not abnegate the researcher from personal responsibility for ethical issues in the course of the study (Fallon and Long, 2007). To undertake research that is both ethical and moral the legislative directive has to be satisfied, but this is only part of the moral principles, rights and relationships that underpin research. My moral principles are rooted in my personal values and beliefs and my experience in caring for the person with dementia and family members and supporting and teaching practitioners in this field. From this perspective, I now examine decisions made about specific issues that arising in this study. In particular involvement of the person with severe dementia in research, concerns about consent and assent in dementia, issues of harm, privacy and the relationship of the researcher with other participants in the study. It has been argued that inclusion in research could result in evidence informed care and treatment leading to decreased vulnerability and increased understanding and respect for the person in the advanced stages of dementia (Heggestad, Nortvedt and Slettebo, 2012). However, as I am involving a person in research where there is no way of ensuring consent careful proxy consent processes are required to protect the person who is unable to give consent (Nuffield Council on Bioethics, 2009). I sought proxy consent aware that family members could be influenced, as the invitation
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came from the senior nurse from the unit who provides daily care to their family member. Family members may also refuse involvement in an effort to defend and protect the person (Nuffield Council on Bioethics, 2009). A study by Elliot, Gessert and Peden-McAlpine (2009) found limited understanding about how family make such proxy decisions. They identified that the primary concern of family members is the best interest of the person in the present, rather than what that person may have expressed before they lost capacity. To address this I adopted a narrative approach to gaining proxy consent and focussed discussion on the person’s life story to illuminate previous beliefs and attitudes to research, in order to support proxy decision making by family members (Elliot, Gessert and Peden-McAlpine, 2009). I took into account the trust each person with dementia had shown in appointing the family member to the role of Welfare Attorney to make decisions for his or her welfare (Nuffield Council on Bioethics, 2009). Although proxy decision making is an integral part of research with vulnerable adults, Butterworth (2005) suggests that it is wrong to assume that the person with severe dementia is unable to participate in the consent process. Despite ethical approval for proxy consent I was sensitive to the key principles of assent and dissent, identifying this as the person with severe dementia signifying choice using verbal, behavioural or emotional responses (Black et al, 2010). McCormack (2002) calls for this process to be grounded in a shared narrative identity, where consent is premised on feelings, actions and the relationship between the person seeking assent and the person with dementia. I was particularly aware of the need for sensitivity about this issue during data collection periods when I observed the person with severe dementia, as this could have been perceived as intrusive. Even in the severe stages of dementia a person retains capacities such as embarrassment, seen when resisting some aspects of intimate care, or showing concern for others (Baldwin, 2006). Ongoing concern about consent, assent and dissent was reflected in observation periods, not only by checking the person’s responses but also by regularly checks with staff and family about any negative reactions they might identify. Respect for the person with severe dementia not only involves
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awareness of the impact of being observed but also in the provision of clear and complete information to all participants about the study. This includes what the person might be asked in interviews, what will happen to raw data and how the findings will be reported. Further, I had to consider not only the participants in the study but also other residents, staff and family who were living in the environment while I was carrying out observation of each person with dementia. While not directly included in the study data, some people did interact with the person with severe dementia during observation periods and while these interactions were included in the field notes, anonymity in these notes was carefully preserved. Stake (2010) places considerable emphasis on the relationship the researcher develops with all those people who may be involved in the study, not only participants. Miles, Huberman and Saldana (2013) suggest that poor relationships between researcher and participants will not only affect the participants but also the quality and credibility of the study. The challenges in this area of research require not only an awareness of procedures for ethical permissions but also recognition of moral principles and a relationship-focused sensitivity to the participants’ emotions, behaviours and responses in each situation. Stake (2010) advocates that this sensitivity is important if harm is to be minimised. I followed a principle based approach in ensuring that I had appropriate and formal ethical approval, following procedures. Described by Van Hooft (2003) as not sufficient, advocating instead a virtue ethics approach based on the person as a moral agent, including the researcher’s character, motivation and emotional state. Therefore, from this perspective I had to consider not only my actions but also how I should practise ethically. I endeavoured to be caring, courteous, sympathetic and empathetic, behaving in a way that was perceived as compassionate, caring and respectful (Van Hooft, 2003). I had to reconcile reducing the likelihood of harm with the benefits the study may provide. Johnson (2004) has argued that small scale exploratory research with vulnerable people may have no specific benefit and a number of such studies may be needed to accumulate sufficient knowledge to be of value. Benefit has to be balanced with the potential for distress or loss of
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privacy for participants, compounded by the difficulty in measuring the benefits, which may not be immediate. While part of the motivation for this study is in fulfilment of the requirements for an academic qualification it is also a longstanding passion about the subject and a belief in the need to understand this period of the journey of dementia. I have reflected on this concern and considered the available evidence, I believe this study is necessary to contribute to the current knowledge about quality of life in severe dementia. To protect these vulnerable participants I have been granted ethical approval, but as an experienced practitioner I am also influenced by my nursing ethos (Raholm, 2003). 3.8. Establishing Rigour in Case Study Stake (2010) identifies subjectivity in qualitative research as essential and the intensive interpretation involved emphasises the constructionist assumptions that underpin case study. This emphasis within case study involves the convergence of multiple perspectives while recognising and addressing possible misinterpretations or insufficient understanding to increase credibility (Stake 1995). Effort is afforded to gain confirmation by seeking
commonalities
and
differences
to
enhance
credibility
in
interpretation of the data and findings (Stake, 1995). Dependability of the findings of this study will be sought by providing a clear rationale for decisions made through the research process, enhanced by the previously identified assumptions underpinning this study (Merriam, 2009). The use of thick and detailed descriptions and varied examples of raw data and analytic processes in this study will enable the reader to make informed decisions about whether the findings are transferable to other contexts (Houghton et al, 2013; Stake 2010).
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Chapter four: Methods 4.1 Introduction In this chapter I describe in detail the methods and procedures, framed by the theoretical, ethical and methodological perspectives examined in chapter three. I then introduce the setting for the study, which is based in a dementia unit within a care home, together with the process of gaining access and developing relationships with the staff and managers. I continue by outlining how I identified participants. For each case study, these included a person with severe dementia, a close family member and a member of staff who knew him or her well. The collaborative approach used to introduce the study to the staff of the care home and the participants is described, followed by the processes devised to gain consent, consonant with ethical permissions. Finally I outline and evaluate my chosen methods for data collection, which include non-participant observation, semi-structured interviews and the use of documents and artefacts. The analytic approach for each individual case study and the cross case analysis is discussed. Issues of rigour and credibility are reviewed. 4.2 Overview of the Research Design I begin this chapter with a diagram of the research design developed for this qualitative collective case study.
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Figure 2: Overview of the Collective Case Study Design
Participant identification and consent 1. Senior nurse identifies and approaches potential participant’s welfare guardian/nearest relative. 2. Welfare guardian/nearest relative contacts researcher. 3. Researcher seeks proxy consent. 4. Researcher seeks consent from family member for interview. 5. Senior nurse identifies and approaches staff member. 6. Staff member contacts researcher. 7. Researcher seeks consent from staff member for interview.
Data collection process 1. Conduct first audio recorded interview with family member. 2. Conduct first audio recorded interview with staff member. 3. Carry out three non-participant observation periods with the person with severe dementia. 4. Review routinely gathered data. 5. Complete rating scales with senior nurse. 6. Collect artefacts. 7. Conduct second audio recorded interview with family member. 8. Conduct second audio recorded interview with staff member.
Individual case analysis and report (for each of the six cases) 1. 2. 3. 4.
Prepare the data. Code using Lawton’s framework. Develop analysis using elaborative coding. Produce individual case report and findings for six case studies.
Case study one
Case study two
Case study three
Case study four
Case study five
Case study six
Cross case analysis 1. 2. 3. 4.
Enter findings from the six cases into the cross case matrix. Identify commonalities and differences. Develop themes. Construct assertions.
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4.2.1 Development of the Study Design The design was underpinned by Lawton’s quality of life framework (1991) interwoven with the philosophical assumptions of Hughes (2011) situated embodied agent theory. I first examine the tension between Lawton’s structured framework, and the development of a protocol for data collection with the flexible and naturalistic approach of Stake (2010) using the approach taken by Hughes Louw and Sabat (2006) within which the person with dementia commands respect for their embodied personhood within the context of the daily life of the care home. I chose an ordered and least intrusive approach while remaining faithful to the naturalistic approach of studying quality of life in the person’s usual setting (Abma and Stake, 2014). Flexibility, as advocated by Stake (2005), was not inhibited by this ordered method and this is reflected within both data collection and the analytic process. The multidimensional nature of quality of life is an essential element of Lawton’s theory of quality of life in dementia, reflecting the richness and complexity of humanity. This concept is described as using four interrelated dimensions to form a definition of quality of life and these are identified as behavioural competence, perceived quality of life, the objective environment and psychological well-being (Lawton, 1991). These dimensions inform the selection of data collection sources and methods. Lawton’s perspective resonates with the case study approach advocated by Stake (2005) by sharing the view that that the data sources and methods selected for a study should be developed from the central phenomenon and aim of the research. Therefore I return to the phenomenon of quality of life using Lawton’s framework (Lawton, 1991) but remain aware of the perspective of the situated embodied agent that forms part of the theoretical assumptions of this study (Hughes, 2011).
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Figure 3: Quality of Life Dimensions, after Lawton (1991).
Behavioural competence Objective environment
Perceived quality of life
Psychological well-being Lawton (1991) indicates that using all four dimensions, (see figure 3), and adopting appropriate data to support each, may more fully examine quality of life. While identifying data sources, I understood that the dimension of subjective experience could be perceived as challenging to uncover. Lawton (1997) suggests that congruence within these multifaceted dimensions of quality of life in his model might help overcome some of the difficulties. Additionally I considered that recognising the agency in severe dementia would allow this subjective dimension to be framed within the person’s limits. By using multiple methods including observation, interviews, routinely gathered documents, rating scales and artefacts interactively and consciously I sought to extend and deepen my understanding of the experiences and perspectives within the study. I recognise the subjective experience of any human being can only be known within limits controlled by that person and these participants select the information they impart. The person with severe dementia has less choice in reporting as a result of deteriorating language and cognition. I acknowledge this position by adopting a social constructionist approach where meaning is co-created not only by language but behaviour and interaction.
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In exploring and examining data collection sources and methods I was aware that each of these would not simply address a single dimension of quality of life (figure 4). Drawing on Lawton’s holistic framework allows recognition that each piece of data is interrelated and can each can be used to interrogate and develop understanding of other data. Stake (2010) describes this process as a search for common meanings, patterns and consistencies within the data. These four dimensions are elucidated and expanded by a range of domains. Such as within the dimension of behavioural competence are expressed domains of health, cognition and self-care abilities among others. Identifying appropriate domains for the person with severe dementia was framed within assumptions and perspectives underpinning this study, particularly the situated embodied agent (Hughes, 2011). Through this lens the person with severe dementia is considered firstly within the narrative context of the life they have lived and life now in the care home. Secondly within the human body of the person with severe dementia, how they interact with others and how the person acts and moves. Thirdly, in relation to the person’s agency and how they actively engage with the world around them. Using this lens I reviewed these domains and dimensions, identifying those salient for the person with severe dementia as a situated embodied agent. Some dimensions of quality of life, such as the objective environment and Behavioural competence were more easily elicited by observation and interviewing (Stake, 2005). The remaining dimensions of psychological wellbeing and perceived quality of life used a principal method of observation of the person’s behaviour and responses. Lawton (1997) considers observation and rating by a professional to be objective measures that may not expose the personal perspective of these dimensions. The use of multiple methods therefore supported and integrated the data. In figure 4, I indicate the data collection methods consonant with the participants and sources available in this study, selected from extensive domains suggested by Lawton (1991). This selection process is important, as domains impacted early in the condition, such as financial management may
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be irrelevant to the person later when activities of living and care may dominate (Lawton, 1991). Figure 4: Data Collection Guide after Lawton, 1991 Dimension
Domain
Data collection method
Behavioural
Physical health
Semi structured interviews
competence
Activities of living and Non participant observation self-care
Movement record
Use of time.
Field notes
Cognitive functioning
Day in the life record
Social behaviour
Routinely collected documentary
Psychiatric symptoms
data
Behavioural
Rating scales including:
symptoms
Functional Assessment
Perceived
Feeling of belonging
Staging of Alzheimer’s
quality of life
Enjoyment of activity
Disease scale (FAST)
Sense of aesthetics.
Spirituality Family and friends
Method (Delirium).
Psychological Positive and negative well being
Confusion Assessment Barthel Index (Activities of Living)
affect
Abbey Pain Scale (Pain)
Emotional expression
Neuropsychiatric
Mood
Inventory: Nursing Home
Social engagement
version (Neuropsychiatric
Objective
Material possessions
sequelae). (Appendix 3)
environment
Social support
Environmental audit.
Interpersonal
Floor plans, room sketches and
network
description.
Living
Diagrams of seating arrangements
accommodation
Photographs of artefacts.
Physical safety Aesthetics
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Choice Privacy
4.3 Consideration of the Researcher Role I visited the home regularly to provide information on the study and develop relationships with the staff and family visitors, taking notes about my impressions. I considered the context of the study while gathering impressions and observations as early as possible, considered to add richness and inform the data collection process (Stake, 1995). Entering the home mindfully I considered what a person without my background in care might experience and notice. I found this a useful approach, as I am very familiar with such care environments and was conscious of Stake’s (2010) exhortation to become immersed in the environment until the familiar becomes unfamiliar. For example, during these field visits I noted a poster in the lift to the dementia unit. This was about activities in the home and opportunities for religious services. No resident would be able to use the lift or be able to read the notices and I considered that these were placed there for visitors. I reflected on the motivation for placing these in the lift, whether this was perceived as a good place for such information. Certainly a person was contained there for a short period and might therefore pay attention to the material. I considered if this might be a form of advertising about the positive provision of care for family members or professional visiting the unit. This reminded me that a care home is a business and advertising is an essential activity to promote success. To prepare myself for data collection, I considered the contribution of my previous knowledge and experience. Having trained in research interviewing for a needs assessment study with older people with mental health problems (McAllister et al, 2006) I was mindful of Field and Morse’s (1985) advice that research skills should not be conflated with clinical expertise. I was familiar and trained in using rating scales, for example the Neuropsychiatric Inventory: Nursing Home Version (NPI: NH) (Cummings, et al, 1994).
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Early in the study, I recruited a reference group of carers, voluntary sector staff, health and social care practitioners and academic colleagues all of whom had personal or professional expertise in caring for the person with dementia at various stages of the condition from diagnosis to end of life. This was invaluable in planning and considering the needs of all those involved in the study. My peers in the group were available for discussion and reflection, reviewing material such as information leaflets. Members of the reference group were able to assist me to pilot and refine the semi structured interview schedule and movement record used in the study. 4.4 Identifying and Recruiting Participants The process used to identify participants for the study began with the person with severe dementia (FAST 7) and I explain the choice of the term ‘severe’. I then identify the inclusion and exclusion criteria determined for this study. A further two participants are involved in each case study, a close family member and a staff member who had cared regularly for the person with severe dementia and was considered to know him or her well. The term ‘severe’ is used for the stage of dementia here, although the later stages of dementia are variously described in the literature as severe dementia, (Burns and Winblad 2006), advanced dementia,
(Volicer and
Bloom-Charette, 1999) or late-stage dementia (Kovach, 1997). This study will use the term ‘severe’ dementia for a two reasons. Firstly, respect for carers’ and families’ sensibilities in the terms used within the study, the terms advanced and late stage are evocative of the end of life, as identified by carers and practitioners from my reference group. The term ‘severe’ carries connotations of seriousness and intensity that may be an easier and more acceptable concept for them to acknowledge. Secondly, the staging system, used to identify participants uses the term severe, the Functional Assessment Staging of Alzheimer’s Disease scale (FAST) (Reisberg, 1988). This was chosen as it provides a fine-grained description of this singular period of dementia. Using descriptions of functional change the scale has seven stages ranging from stage one, considered to be the functional stage of the normal adult, up to stage seven which is defined as severe dementia. Severe
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dementia in stage seven is further divided into more in depth descriptions and termed as 7a to 7f. Despite this scale being developed for Alzheimer’s disease, Reisberg (1988) suggests that this utility for all who have dementia regardless of diagnostic category or medical disorders. There are a range of other staging and assessment tools including the Mini Mental State Examination (MMSE) (Folstein, Folstein and McHugh, 1975) This has a floor effect, or a distinct lower rating beyond which the tool can no longer able to measure, and the person with severe dementia will deteriorate for a considerable period after this limit is reached (Schmitt et al 2009). A revised scale has been developed to address the floor effect of the MMSE, the Severe MMSE, yet this still requires some verbal skills, making this unsuitable for this study (Harrell et al 2000). Alternatively the Guy’s Advanced Dementia Schedule assesses the person with severe dementia who is unable or limited in their language or responses (Ward et al 1993). However, this scale requires in depth knowledge of the person, the care home staff were not trained to use this scale and I had no contact with participants until after selection. The inclusion and exclusion criteria for participants with severe dementia in the study are outline in figure 5 and explained below. Figure 5: Selection Criteria for Participants with Severe Dementia Inclusion Criteria
Exclusion Criteria
The person has a diagnosis of dementia.
The person has no acute physical health problems and/or delirium.
The person has been living in the
The person has no acute and
dementia unit for more than two months. distressing pain. The person has been assessed as being at The person has no history of FAST stage 7a−7e, defined as the stage
fearful or distressed responses
when "the cognitive deficits are of
to being observed.
sufficient magnitude as to compromise an otherwise healthy person's capacity to
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independently perform basic activities of daily life. Such as dressing, bathing and toileting" (Reisberg et al, 2006; 83) The person is regularly visited (at least once a week) by a family member with knowledge of the person's life before the emergence of dementia and who continues to have frequent contact. Information to assist identifying participants was provided to senior care home staff and the General Practitioners were advised about the criteria. I collaborated with the senior nurse in the dementia unit to identify each person with severe dementia who might be able to engage in the study using the structure provided by the FAST scale rating of 7a to 7f (Reisberg et al, 2006). I sought confirmation from her that there was a diagnosis of dementia noted within the plan of care. No diagnostic categories of dementia were excluded; differential diagnosis of dementia, while considered important in the early stages of the condition, is less differentiated in the severe stages (Newhouse and Lasik, 2006). Some dementia related symptoms may differ from one individual to another, yet these do not limit exploration of quality of life. It was important that person with severe dementia was not included when currently experiencing acute physical health problems, delirium or acute distressing pain. These would inevitably impact on quality of life while not being the usual experience for the person. As discussed in chapter three, a near relative or welfare guardian was provided proxy consent for the person with severe dementia to participate. In all six cases this person also became the family participant for the study, as all had close and continued contact with the person who had severe dementia. The staff member, as a participant in the case study, also required in depth knowledge of the person with severe dementia, therefore an inclusion criteria was included for the person with severe dementia of a minimum of two months residence in the unit. This not only ensured that the person with dementia had not been recently subjected to a transition of care 80
but was considered a minimum period of interaction to inform the data collected from the staff member. Although all the participants with severe dementia, lived alongside other people with dementia, others residents were not included within the bounded case that was used for the study. Other residents in the dementia had minimal interaction with these participants, therefore during observation periods their activity was only recorded when this impacted on the person with severe dementia using a pseudonym such as resident A (Stake, 2006). 4.4.1 Negotiating Access to the Research Setting The context of the six case studies was a 22-place unit for people with dementia within a 60-place care home, part of a large private care company. The residents here are either termed frail or persons with dementia, although in reality most were likely to experience mixed morbidities. Most of the care staff had been there for some years but there was some transition among the younger group of registered nurses rather than for older support workers. There have been three managers in the home and three managers in the dementia unit over the five years of the study period, although this has been stable over the last three years. I made some pragmatic choices about the care home and this included the opportunity to access at least six people with severe dementia to carry out the case studies. After discussion and exploration with members of my reference group and other colleagues in practice in the community, I decided to contact two large care homes in the local area to explore access for research. Both were keen to be involved and I visited both units to speak to managers. The open and supportive response of one of the managers influenced my decision to select the home. I was made aware that, given the changing population; there might well be periods where there might be no suitable participants. If this occurred I was given the option of accessing other care homes within that care organisation. I decided against this, as the relationships forged in the current home had taken some time and effort to develop and sustain.
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My second consideration in the choice of home was the quality of care provide, finding a care home achieving a reasonable standard of care was important. Some care homes do not provide optimal care (Care Commission and Mental Welfare Commission, 2009) and I considered that this was an added layer of complexity, which could detract from, rather than contribute to the study. Poor care and the impact on quality of life was not an isolated factor in the study and this connection has been examined elsewhere (Older People’s Commissioner for Wales, 2014). This care home and the dementia unit in particular, were anecdotally considered within the local community to provide a very good standard of care for the person with dementia. In addition previous Care Inspectorate reports for the home had been generally positive with reasonable grades. The Care Inspectorate in Scotland is the national regulator and inspector for care homes and reports on each home are publically available from both announced and unannounced visits (Scottish Government, 2015). In the course of this study it was important to become immersed in the care home environment, although this might become intrusive to respondents and staff. Members of my reference group believed that this might be addressed by making my presence as routine and ordinary as possible, making initial contact for short periods. When I received ethical permissions and before I began to seek participants, I spent some weeks ensuring that family visitors and staff were provided with information about the study. This included a short piece in the care home newsletter (Appendix 4) and leaflets explaining the research for the families and staff (Appendix 5). Information was provided for the General Practitioner group providing medical services to the home (Appendix 6). I remained sensitive throughout that this was the first time the residents and staff in the home had been involved in research and I was keen this should be a positive experience. The data collection period for each case study lasted no more than six weeks, based on the need to be as unobtrusive as possible in the lives of these vulnerable older adults and the premise that they may have rapid and serious changes in their health and well-being. This short intensive period of data collection required careful planning and sensitive management. At this
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stage in dementia the person was at risk of morbidity and high mortality. The total data collection period for the study was approximately three years, partly because of my personal circumstances, causing an extended gap, and partly because of availability of suitable participants within the limits of the inclusion and exclusion criteria with a family member who could give consent to involvement. I observed during periods throughout the daytime in the home but not during periods of intimate care, as I did not wish to add to the stress of the person with dementia. I also considered that my presence might alter the practice of the staff carrying out care. I included care episodes such as moving the person or assisting with eating and drinking and concerns around intimate care were elicited during the interviews with family and staff members. Data collection periods were carefully planned to allay any anxieties about intruding on the person’s intimate space. Yet I was aware of the difference between casually passing through a sitting area and watching carefully every move and response of the person for long periods of time. I also considered how my behaviour might impact on the lives of other people who lived or worked in that same area or environment, adopting an approach of “common sense and good manners” (Stake, 1995: 60). This was underpinned by my professional code of conduct (Nursing and Midwifery Council, 2015), which guides and sets the professional standards for nurses in practice, education, leadership or research roles. 4.4.2 Participant Recruitment The senior nurse identified potential participants with severe dementia, using the FAST scale (Reisberg et al 2006), with my support and guidance. She then approached the guardian, welfare attorney or nearest relative of the person about the study with a letter and response form, which contained my email and telephone number. I was not aware which resident had been selected until the person with power of attorney decided whether or not to speak to me. I arranged to meet the person in the dementia unit and provided them with additional written and verbal information about the study (Appendix 7). Family members included as participants had written and
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verbal information and consent forms provided (see Appendix 8). In each case I was invited to the family member’s home to carry out the interview. Written consent was gained before the interview began. In a similar process, the senior nurse selected the staff member closely and regularly involved in the person’s care. She approached the staff member and asked if they would speak to me about the resident. After the staff member contacted me, I also provided written and verbal information and consent forms (Appendix 9). I gained consent before the first interview, which was held in a quiet room within the unit. 4.3 Ethical Approval In line with the requirements of the Adults with Incapacity legislation (Scottish Government, 2000), ethical approval was sought from the Scotland A Research Ethics Committee for this study. I found the process rigorous, having to submit twice before being successful. On the first occasion the Committee were not convinced by the justification for the study and it was incumbent on me to revise and expand this to produce a more robust argument. I worked with my supervisors, returned to my reference group, local carers group and Alzheimer Scotland colleagues to take advice about the study. Having revised this I was successful in gaining ethical approval. Some of the key ethical issues considered in this study were around consent, assent and dissent, anonymity, confidentiality and my role as a researcher. During observation periods I remained aware of behavioural, emotional or verbal response indicating distress. Discussions with the care home staff and family members explored how they perceived the person with dementia was responding to observation. Concerns about the person’s response and health were checked with their General Practitioner. I had made provision for any negative, stressed or distressed response that appeared to be related to the observation period. Should these occur on three occasions over any observation period, I would cease data collection and this case study would not be included in the final report. The family member providing proxy consent was reminded of this concern regularly throughout
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the study. In reality the observation periods created no challenges and distress was not identified by family, staff or myself. As I was aware of the identity of both the participants and the site, it was obvious that true anonymity is not possible in such a study. Using pseudonyms and careful writing about potential aspects that could lead to them being identified might not be sufficient as information provided in the study could be inimitable to that person or site. Considerable care therefore was taken to ensure identifying factors about the person with dementia; family, staff and care home were identified and anonymised. The data collected for the study included interview records, both digital and transcribed, observation records and notes, documents related to the person with dementia and photographs of objects in the environment. All data was stored in both written and electronic formats. Written material was stored in a locked filing cabinet with accessed only personal access and electronic data was stored on a password protected computer with an encrypted flash drive used to ensure data was securely backed up. 4.4 The Case Studies A data management protocol was developed to promote consistency of methods across each of the six cases and a short form of the data management protocol is included in Figure 6. It may be seen from this that the data was collected sequentially for each case study and this was crucial to the process of both data management and analysis.
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Figure 6: Data Management Protocol Data
Type of data
Data source
Data management
Audio recorded
Family member
Transcribed in full with analytic notes, added immediately after the
collection 1
interview
interview and following initial coding
Analytic notes 2
Audio recorded
Staff member
interview
Transcribed in full with analytic notes, added immediately after the interview and following initial coding
Analytic notes 3
Three non-
Person with severe
Charts collated and numbered with dates, times and sequence
participant
dementia
Field notes completed during the observation periods and analytic
observation
notes completed afterwards.
periods with
Notes and sketches of the environment and position of others in the
movement charts
room.
and field notes. Analytic notes 4
Rating scales for
Senior nurse
CAM scale for delirium. Completed before each period of
delirium, pain,
observation to ensure that the person was well enough to be
functional status
observed.
and
Abbey pain scale, Barthel Index and Neuropsychiatric Inventory
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neuropsychiatric
completed once for each case study.
symptoms 5 6.
Document review Photographs
Review of care notes
Care notes
and medication sheets
Medication sheets and administration records
Artefacts
Photographs of objects such as family photographs, ornaments and
Documents
objects. This data set also included, for example, other documents
Leaflets
such as Care Commission reports, advertising material for the home and content of notice boards.
6
Audio recorded
Family member
interview
Transcribed in full with analytic notes, added immediately after the interview and following initial coding
Analytic notes 7
Audio recorded interview
Staff member
Transcribed in full with analytic notes, added immediately after the interview and following initial coding
Analytic notes
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4.5 Methods Data collection methods used for the case studies included non-participant observation, semi-structured interviews, field notes, analytic notes, rating scales, routinely collected documents, the built and sensory environment, other relevant documents and artefacts. 4.5.1 Non-participant Observation Observation of behaviour, with no intervention, is considered essential in case study (Coolican, 2004, Stake, 2005). While I accept that the observation of the person with severe dementia does not provide complete information about the lived experience, language decline in dementia does not allow discourse and interview for most people at this stage (Harding and Palfry, 1997). Having decided that observation was one of the primary means of data collection for this study, I adopted a non-participant stance on the observation continuum. I chose this rather than participant observation as I was aware of the impact on collecting data while working closely with vulnerable people and carrying out other tasks (Babbie, 1998: Gillham, 2000). As a qualified nurse I was unsure of my ability to maintain my focus on the person with severe dementia during care episodes and therefore chose to remain outside the interactions on the unit. However this decision was not without challenge, being in a room containing other people with dementia meant a number of decisions had to be made throughout the period of observation. While residents were mainly unable to walk unassisted and I could select seating that allowed me to see the participant without obstruction, those few residents who were still mobile would approach me and I found this difficult initially. I was drawn to respond to their overtures and I sought help from the staff, who would gently distract the resident when they saw this happening. For each of the case studies I carried out three periods of observation, usually over a two week period. One period was identified in the morning, one in the afternoon and one in the evening. Before I began each of these periods, I spoke to the staff to ensure they were aware that I would be observing and to check that I was not interfering with any care the person
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needed. On one occasion I had been observing one of the participants when I heard a staff member speak to another at the door of the sitting room, “We can’t take A (the person with dementia) to the toilet just now as M (the researcher) is watching her”. I reassured them that the person’s needs must come first and they should continue as usual and I would suspend observations until they returned. This sensitised me to beliefs held by some staff that they were not allowed to interrupt me and I had to be alert to this. Most observation periods were without any disruption apart from periods of intimate care when the person was taken to their room and on one occasion the person became sleepy and was assisted to bed, shortening the period of observation. During these observation periods, I stopped every 15 minutes and wrote up field notes about the observation period or simply observed and noted the environment of the unit. During the observation period, I completed a movement record each minute of the person’s facial and body movements. This movement record was developed from discussions with experienced dementia care nurses and my own experience of the likely range of body and facial movements the older person with severe dementia might be able to exhibit. Colleagues in practice gave advice based on their observations of the patients they cared for. Cone (1999) suggests that these records provide relatively inclusive data about behaviour during observation and are useful when limited behaviours are observed. I considered this record appropriate for these participants, whose movements and facial expressions were limited in range and frequency. Field notes were completed concurrently to contextualise the reactions and responses of the person in the environment. Following each observation period I completed analytic notes using a structured format to allow self-reflection and external review. These included an examination of theoretical, methodological and personal notes taken during the observation periods and during breaks (Polit and Beck, 2008). I was aware that observed behaviour can be influenced by the observer, identified in the ‘Hawthorne effect’, from a factory study of the 1920s which concluded that people behave differently when being watched (Watson et al
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2008). While this was noticeable in some staff I had not considered that this might also be applicable to the person with severe dementia. However, I found on a on a number of occasions I had to move my position as it appeared that the person was looking directly at me. While Coolican (2004) suggests that non-participant observation is likely to have less effect on participants than other observational methods, it appeared to have some effect on the responses of the person with severe dementia. In preparation for this study, I considered the use of video recording of participants to enhance observation and to capture the person’s subtle behaviours and responses. This might have facilitated repeated and in depth analysis of this visual data and has been used in a study of people with dementia within a day centre (Cook, 2002). However, there are disadvantages for these participants who cannot give informed consent to this approach. Both the person and family member may not wish them to appear on film given their frail and vulnerable condition. Using video in the public areas of a care home would also have captured other people who had not consented to be part of the study. I note from my previous experience and current observations that there are few photographs taken of people at this stage of the condition and that this maybe an indication of the reluctance of family to have this permanent record of the person. The management and senior staff were also very negative about filming in the home. They perceived that it would be unacceptable to some of the family members and may produce negative responses from some staff. My decision is supported by Stake (1995), who argues that audio and video materials may be useful to check the exact words used, but are not a substitute for accurate observation and cannot provide the richness of the moment of observation within the context. He considers that the amount of such data and its value to the finished study is small and that the focus should be on the skills of the observer (Stake, 1995). I reflected that while my concerns about using video were mainly ethical, I would not improve the study quality using this method. As a single researcher carrying out observations I considered issues such as observer objectivity, human error and value judgements and the credibility of the resulting data. I have some experience in observing and
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recording material as a researcher, auditor, lecturer and mental health nurse. I took into consideration that I am familiar with this type of care environment and care work and this could influence what I notice. In practical terms, I ensured that the observation periods were interspersed with rest periods to reduce the impact of the intense concentration required during the observation process. Maintaining a reflective diary throughout allowed me to increase dependability by interrogating my findings and discussing concerns with my supervisory team. 4.5.2 Semi-structured Interviews Abma and Stake (2014) consider interviewing one of the most important methods in qualitative case study research. I chose to carry out semistructured audio recorded interviews with two people close to the person with severe dementia for each of the case studies, using an interview schedule (Appendix 10). One person was a family member who knew the person well and visited often and the other a member of care staff, who had cared for the person for at least two months and was with them on each working day. I piloted the semi structured interview questions with two carers from a local day care support group who had cared for family members before they moved to care homes. Both carers found the questions easy to answer and suggested that I allow more time for the family member to talk about the journey through dementia, as they considered this is often neglected when the person is admitted to a care setting. They indicated that the family member might find it easier to talk about the current situation after being given time to speak about the events leading to the transition to a care setting. I found this a helpful conduit to the subject of the person’s quality of life in the home. I piloted the semi-structured questionnaire for staff, with a range of practitioners from another local care setting. This proved useful, as I was concerned that my questions may lead the participants to focus on the quality of care issues at the expense of quality of life as the central phenomenon. I used semi-structured interview schedules for family and staff members to frame the first interview and ended the interview with two
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questions: “Is there anything else you would like to tell me about what we have been talking about?” and “Is there anything you wish to ask me?” I provided the participants with a copy of the interview schedule before we began (Stake, 2010). The family interview began with general background questions about the person with dementia, moving to an outline of the person’s journey through dementia leading to their transition to care. Then the interview became less structured as the person’s life in the care home was discussed. Family interviews were carried out in their homes allowing them to decide when the interview would start and finish, most were between 60-90 minutes duration. The second interviews were shorter at less than 60 minutes. During the interview I used a range of nonverbal and paralinguistic prompts to encourage the participant to explore issues in more depth. I had expected the use of audio recording to cause some anxiety for participants but they appeared unconcerned and generally ignored the recording equipment. The staff interview took place in the care home setting and this created a few concerns. While the senior staff were supportive, care needs had to be given priority and I had to be available for interview, while waiting for a quiet period in the day. Privacy was a challenge as there were few private spaces for staff and the only space was often the small sitting room. This could only be accessed if the family visitors did not require this space. Interviews were generally shorter; staff had less information about the person in the past and focused mainly on recent events. The staff member involved in the first interview was initially nervous and unsure of the audio equipment. I took great care to reassure her and spent some time before the interview listening to and addressing her concerns. After reading over the interview schedule she became more relaxed and as the interview progressed appeared comfortable. The subsequent interviewees did not express the same concerns and I assume that the process had been discussed on the unit, reassuring other staff. After both the family and staff members’ first interview I developed questions based on the data I had collected. The second interviews were based on the content of the first and the observations of the person with
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dementia. I did not include information from the other person’s interview in order to maintain confidentiality. While I had offered transcripts of interviews to family and staff, I found as Stake (1995) suggests, there were few comments provided from any of the interviewees. These were mainly related to identifying that the content was correct. Instead I found verification of the content and understanding of the first interview developed as part of the process of the second interview. During this second interview the family or staff member were able to co construct meanings with me from the information I provided from their previous interview and the observation periods, helping me to develop my understanding. I therefore used the second interview not only to collect further data, but also to provide a form of member checking, exploring the accuracy of my understanding and increasing credibility of the data (Houghton et al, 2013). I began all the second interviews with a summary of the first and then discussed any points that arose, participants considered that this was a sufficient and useful way to allow them to check and assist in developing my understanding as data collection progressed. 4.5.3 Analytic Notes I used notes throughout the study in order to describe in full what was happening as I experienced events, I also used analytic notes to support my progress in understanding the data and developing findings. Analytic notes are not descriptive but reflective and may be used to gather thoughts and emerging connections within or between data. These can include ethical, methodological and theoretical reflections on the study and are used during data collection and analysis. Miles, Huberman and Saldana (2014) consider analytic notes to be a powerful tool to make sense of the process of analysis. These analytic notes can reflect on the experience of observing the person or developing early ideas about where instances being observed relate to one another. Analytic notes were also used for images in the study, such as photographs of the personal objects in the participants’ rooms, focussing on the impressions these generated rather than simple descriptions (Miles,
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Huberman and Saldana, 2014). These analytic notes are also used in the development the case descriptions to illuminate the context and findings. 4.5.4 Other Data Sources This included routinely gathered information, rating scales and artefacts. Care notes were reviewed in detail as these contained the main source of written information about the person with severe dementia. These notes were maintained by the registered nurses on the unit and contained information about the person’s history and current health and well-being, medication records and routine measures of weight, skin condition and risk assessments. A range of standardised rating scales were used variously to determine the person’s inclusion and exclusion for the study, as a source of contextual information and to confirm or interrogate information from other data sources. The senior nurse on the unit completed these, supported by detailed information. I then reviewed these with her to check the components of the scales were correctly understood and any calculations were correct. These rating scales are all observational and do not require any verbal response from the person with severe dementia. These scales are:
The Functional Assessment Staging of Alzheimer’s Disease (FAST) scale (Reisberg et al, 2006)
The Confusion Assessment Method (CAM) (Inouye et al, 1990)
The Barthel Index (Mahoney and Barthel, 1965)
The Abbey pain scale (Abbey et al, 2004)
The Neuropsychiatric Inventory: Nursing Home Version (NPI: NH) (Cummings et al, 1994)
The FAST scale (Reisberg et al, 2006) identified a number of characteristics of the person with severe dementia supplemented by the Barthel Index (Mahoney and Barthel, 1965) an ordinal rating scale developed to measure levels of independence in the person’s ability to perform their personal care and their mobility. While all these participants with dementia would be expected to be fully dependant, this scale provided a confirmation of the picture of data derived from other sources, including care notes.
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I included delirium in the exclusion criteria for the study as this is an abnormal state and is not representative of the usual condition of the person with severe dementia. In addition it was important to ensure that the person being observed was not acutely ill. In order to identify the possible presence of delirium I included the CAM scale, designed for use by non-medical staff and providing a comprehensive assessment of delirium (Adamis et al, 2005). The CAM is easily administered with a sensitivity and specificity of more than 0.09 (Inouye et al, 1990). Exclusion criteria included the presence of acute and distressing pain because as this is not the usual experience for the person. Staff perceived they would recognize if the person was in pain and there were no rating scales routinely used in the home. Therefore, the Abbey scale (Abbey et al, 2004) was included as a short rating scale for pain, based on observation of the person with dementia. While it distinguishes between acute, chronic and acute on chronic pain, it does not entirely define the boundaries of these, although this is widely used. The person at this stage of dementia may exhibit a range of responses, emotions and behaviours that are the result of their current condition and in order to interrogate these I used the NPI: NH scale (Cummings et al, 1994), This was developed for the person with dementia living in a long-term care environment and elicits information about a range of affective and behavioural responses including agitation, disinhibition and lability. (Wood et al 2000). This tool provides a score for both frequency and severity of this experience for the person with dementia and identifies the impact of behaviour on staff members. Examining artefacts such as articles or objects can include any objects influencing the person’s life and experience (Prior, 2003). Personal objects can provide contextual information about the person’s life in the past and in the present day. When a person enters the care home they are often encouraged to bring meaningful objects, photographs and furnishings to make the transition more comfortable. Some objects may have deep significance for the person with dementia and some consideration of these is
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be helpful to develop the narrative of the person’s past life and support or interrogate some of the findings of the study. The importance of the built and sensory environment to contextualize the experience of the person was included by using observation and reflections and recorded in the field notes. Other documents were also consulted such as Care Inspectorate reports and other materials available in the care home, such as the home mission statement, minutes of meetings and newsletters for family. 4.6 Data Analysis I began the analytical process by organising and preparing the data for each case study in the order in which it had been collected. Within this diverse range of case study material, data reduction was carried out by extracting some of the extensive biographical information about the person from interviews and care notes to produce a pen portrait for the case study description (Merriam, 2009). The remaining data set including transcribed and recorded interviews, field notes, routinely recorded documents, rating scales and artefacts were included in the analytic process. I used analytic notes during data collection, capturing my reflections on both the process and the emerging issues and ideas (Merriam, 2009). I familiarised myself with the data not only to develop an overall understanding (Gillham, 2000), but also by looking closely and in detail to begin interpretation (Stake, 2010). I became familiar with the emerging concepts and their context within the data (Bradley et al, 2007). While reading and re-reading written material, listening to the digital recordings and adding analytic memos, I began to deepen my understanding as I moved between the data and the research propositions (Stake 2010). I then examined each case study using a structured framework based on the work of Lawton (1994). I began by entering the raw data into a coding frame (Figure 7). When the data was displayed in this preliminary analytic process, I then began a second level of analysis using an elaborative coding approach. This involved returning to the displayed data, including the raw data set and reframed by the theoretical perspective of the situated
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embodied agent (Hughes, 2011). I continued to move iteratively through this process to develop findings and a thick case description. I repeated this process for all six case studies. I then progressed to a cross case analysis of the six case study descriptions, entering the findings on a matrix, where commonalities and differences could be compared, interrogated and identified. Themes were developed from this process. 4.6.1 Coding the Data Following data preparation Lawton’s dimensions and domains of quality of life were used as a preliminary analytical lens to scrutinise the data. (Figure 7). Figure 7: Coding Frame Based on Lawton's Theory 1 Behavioural competence
2 Perceived quality of life
3 Psychological well being
4 Objective environment
A
Physical health
A
Feeling of belonging
A
A
Material possessions
B
Activities of living and self-care Use of time.
B
Enjoyment of activity
B
Positive and negative affect Emotional expression
B
Social support
C
C
Mood
C
D
Cognitive functioning
D
Sense of aesthetics. Spirituality
D
Social engagement
D
E
Social behaviour Psychiatric symptoms
E
F
Interpersona l network Living accommodat ion Physical safety Aesthetics
G
Choice
H
Privacy
C
F
Family and friends
E
This process had the advantage of collating diverse sources of data into a more manageable and ordered arrangement. While following a set of preselected codes seems at variance with the deeper understanding sought though a qualitative case study approach this provided the benefit of an a
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priori coding system taking advantage of previous research and a robust framework about quality of life (Lawton, 1991; Miles and Huberman, 1994). This does risked placing data within a coding frame that does not entirely encompass meaning or context (Bradley, Curry and Devers, 2007). This a priori coding may also inhibit exposure to rival explanations for findings, impacting on rigour in analysis (Miles, Huberman and Saldana, 2014). Miles, Huberman and Saldana (2014) identify coding not as a mechanical task but a deep reflection and interpretation of the data. This initial coding frame did sensitise me to some issues, for example the impact of physical health and self-care on quality of life (Miles, Huberman and Saldana, 2014). However, as I continued to order the data into these tables, I found that rich instances in the data were being deconstructed and broken up into multiple codes. Although this process of taking data apart and putting it back together in a different way to make the data more approachable is advocated by Stake (2010) and Silverman (2007). I remained aware of these tension as I continued to complete the coding as an initial analytic step using Lawton’s theory of quality of life in dementia (Lawton, 1994). While coding and displaying the data, I found that some of the richest data was now fragmented into various dimensions of the framework and had lost some complexities of meaning. I therefore turned to the suggestion by Saldana (2013) to use elaborative coding, allowing me to build and develop these codes from the preliminary analysis. Stake (1995) also suggests using this process of pre coded data first then revisiting this together with the raw data looking for new codes using direct interpretation and categorical aggregation, described in chapter three. I also returned to the perspective of the situated embodied agent (Hughes, 2011), which forms part of the philosophical underpinning for the study and began the process of developing elaborative codes. I began to develop the case as a narrative (Simons, 2009) using the initial analysis from Lawton’s (1994) framework and elaborating and developing this through the situated embodied agency lens of Hughes (2011). As I wrote and rewrote the case description, I also looked for significant meanings in single instances using direct interpretation and where meanings were
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repeated often across the data set, categorical aggregation (Stake, 2010). This iterative process, involved moving backwards and forwards through the raw data and initial codes (Simons, 2009). I included my analytic notes, developed throughout the data collection and early analytic process. I also returned to my research propositions. Stake (2010) explains this process as an iterative synthesis moving between being sensitive to the research propositions and the corpus of data. I provide an example here from one of the individual case studies of this process of moving from the narrative derived from analysis using Lawton’s framework to elaborative coding, including using the lens of the situated embodied agent. Using an example of the analysis from the first case study, Mrs Flower, I have selected the codes 1D Cognitive functioning and 3B Emotional expression derived from Lawton’s framework and will examine how some of the initial data coding was developed using elaborative coding.
In 1D
Cognitive functioning the person is described in her care notes as not having capacity, being confused and disoriented due to her dementia. While family and staff accept that she has severe dementia both attribute to her an ability to think about her situation and remember her past life. “I want to be going for flowers I want to be going up the street, I want to be doing this and I can’t”. (Daughter). “She actually she burst into tears so she must have thought that. She still might be conscious, I’m far away” (Staff). In 3B Emotional expression the family member and the staff member diverge, her daughter identifying emotional responses by her mother such as crying in response to her daughter leaving to go home, that lead her to her conclusion about her mother’s ability to have an inner cognate life. The staff member on the other hand sees little emotional response that indicates thinking. “She just sits there and you give her a drink and she takes the drink, give her the chocolate she takes the chocolate, there is nothing to say about her” (Staff). Returning to my analytic notes indicate I considered the concept of cognitive dissonance, described as experiencing a process of psychological
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conflict emerging from incongruous beliefs and attitudes held at the same time (Merriam Webster Dictionary, 2015). While clearly understanding that Mrs Flower had very advanced dementia, both family and staff attributed active cognitive thinking, remembering and reasoning to her that could be perceived to be in conflict with her presentation in daily life. However cognitive dissonance introduces the idea of mental conflict and neither person appeared to find incongruity in the ideas they held. This belief they expressed about her instead reflected the concept of “agency” identified by Hughes (2011) as the person acting and responding in the context in a way that is interpreted as human. The sense of the person retaining purpose reflects the preservation of the self, identified by Sabat (2001). The nurse also identifies agency as defined by Lawton, which is explained as a striving for maximum comfort. Therefore using these analytic notes and the raw data from the interview together with the coded data, I then elaborated the codes of Cognitive functioning and Emotional expression, and developed a category that encompassed this data. This was termed “There is something there”, where the person is seen as aware and seeking comfort by trying to connect with others as an agent (Case Study one: Mrs Flower). By using this analytic process I produced a rich case study report and developed findings for each of the six case studies. I now turn to the cross case analysis using these case reports. 4.7 Cross Case Analysis Cross case analysis is described as stacking comparable cases (Miles, Huberman and Saldana, 2014). The first step in this process was to enter the findings of each of the six cases into a cross case matrix (Figure 8). Figure 8: Cross Case Matrix Cross
Mrs
Mrs
case
Flower
Gardener Findings Findings
Themes Findings
Mr Artist Mrs
Mrs
Mrs
Musician
Walker
Cook
Findings
Findings
Findings
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The use of a matrix is considered a systematic yet creative approach to help understand the meaning of these findings allowing comparison and generation of cross case themes (Miles, Huberman and Saldana, 2014). Moving through this process of analysis I remained aware of rival explanations that might influence my approach and in addition to returning to the literature I also used my own knowledge and experience to explore the possibility of different ways of understanding and interpreting the data (Stake, 2010). The findings from each of the case studies were interrogated to seek commonalities and differences between these, moving back and forth between the collective cases and individual case descriptions. Where necessary I returned to the raw data to verify or substantiate choices I made about developing themes. When these themes were identified these were reordered to reflect their level of importance to the research propositions. The themes emerging from this final analysis are presented in Chapter Five, together with evidence from the extant literature and source material from the individual cases to support their inclusion. These themes are then used to inform key assertions (Stake, 1995). He considers that the readers of case study research will use assertions to interrogate current knowledge, experience and beliefs about the phenomenon. I believe the stance taken by Stake (1995) to be consonant with the social constructionist approach underpinning this study. Therefore I will outline the assertions I have derived from my data analysis about the quality of life for the person with severe dementia. These assertions will be used to frame recommendations for practice and education and policy and identify future possibilities for research. 4.8 Rigour and Credibility To support rigour I have outlined and provided a rationale for methodological decision made throughout this research process; while these are my interpretations this allows others to understand how each one was developed (Houghton et al, 2013). The trustworthiness of this study is
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reflected through the completeness of the decision trail presented in this chapter (Koch, 1993). In the context of case study design, I used a range of sources and methods to increase convergence of the data and provide as complete a picture of the phenomena as possible, this is considered a major strength of this approach (Burns and Grove, 2011; McGloin, 2008). These multiple sources of data have been identified as related to a range of domains of quality of life allowing continual interrogation and comparison of data to confirm and disconfirm findings, increasing confidence in the credibility of the study (Houghton et al, 2013). I adopted the perspective of the researcher as an instrument, where data collection and data analysis are enmeshed and others cannot easily bring background knowledge and philosophical assumptions to the process of analysis (Bradley, Curry and Devers, 2007; Stake, 2010). This begins to address concerns about the quality of findings in a study where there is no second researcher available to check the analytic process. However, I also worked closely with my supervisory team, examining raw data and resultant case descriptions and cross case analysis, and their complementary expertise in
qualitative
approaches
ensured
I
continually
interrogated
my
assumptions. 4.9 Leaving the Field of Study I had been involved with the care home setting for this study for over three years and staff were familiar with my intermittent presence. It was important to prepare to leave the field of study. I had ensured that information about the study had included a commitment to return to inform participants who wished to know about the outcome of this work. I have maintained email and telephone contact with the home manager since to maintain the flow of information about my progress. All but one of the participants with severe dementia has died since their involvement in the case study ended. Staff informed me after each death and I wrote to the family member to offer condolences. One of the family participants showed great interest in this study and asked if she could be
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involved in other projects. She became part of a project to co-produce a film with carers, practitioners and student nurses about advanced dementia. Other family members have requested information when the study is complete,
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Chapter five: Findings and Analysis 5.1 Introduction In this chapter I present the findings of the six case studies and the cross case analysis. Following an overview of the chapter including a description of the case study participants, I develop these six cases beginning with short biographies of the person with severe dementia (FAST 7). This is followed by an account from the perspective of each of the three participants in each case. Data analysis begins using the lens of Lawton’s theory moving to develop elaborative codes that included the philosophical perspective of the situated embodied agent. I complete these case reports by presenting the findings of all six case studies. These are synthesised in a cross case analysis, resulting in five themes which reflect the experience and perceptions of quality of life for the person with severe dementia. 5.2 The Care Home Having given a rationale for my choice of care home in chapter four, I will describe the setting to provide a context for the findings (Merriam, 2009; Stake, 2010). The home is set within a new housing estate in a rural area and provides accommodation for 60 residents. The view from the windows has a car park for the home at the front and a large garden at the back. Set on two floors, downstairs rooms are provided for 38 people, considered to be frail and upstairs is the dementia unit where there are 22 bedrooms. A lift or stairs leads onto a long corridor with a set of fire doors in the middle. To the right each side of the corridor has a series of bedroom doors and at the end a combined sitting and dining room. This room is where residents spend the daytime hours. There are small dining tables around the perimeter of the room and armchairs placed in various groups, some around the television and some in smaller groups around the large picture windows on the left side of the room. Chairs are placed mainly side-by-side, with little space between. There is a picture menu on the wall away from most of the tables. The floor is vinyl with a wood effect surface. Leading off this space is a smaller sitting room, initially a bland environment with mismatched chairs used for residents who had a number
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of visitors or when the activity staff were running small groups. The sitting rooms were both redecorated during the study and family members were included in the decisions on colour and design. The change included brightening the colour scheme and changing the small sitting room to reflect 1950’s style. Residents all have their own bedroom and self-contained shower room. Many had furniture and objects from their previous home in addition to standard pieces from the care home. The bedrooms generally contained a single divan, small wardrobe, chest of drawers, chair and bedside cabinet All of those people resident in the dementia unit have a diagnosis of dementia. While a few people are able to walk unassisted, the majority require the assistance of the care staff often the use of lifting aids and wheelchairs. The care philosophy used a person centred approach, evidenced in the brochures available about the home and individualised care was set within a structured day, with main meals and medication rounds delivered at predetermined times. 5.2.1 Case Study Participants Six individual cases form this study and an overview of the participants is described in figure 9 below. Each case study involved three participants, the person with severe dementia, a close family member and a member of staff who knew the person well. The group of people with severe dementia included five women and one man with ages ranging from 78-90 years who had been resident in the home from between fifteen months to three and a half years. The family members who were participants were comprised of five daughters and one husband, all had power of attorney for the person with severe dementia. Six female care staff were identified by the senior nurse and interviewed. In order to reflect my philosophical assumptions and promote autonomy, I chose to identify the participants with severe dementia (FAST 7) using motifs from key interests alluded to by the family member, for example Mrs Flower (who was formerly the flower arranger for the church) Mr Artist (who previously painted as a hobby).
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Figure 9: Key Characteristics of Participants
Case study
Gender
Age of the FAST scale
Length of
Relationship of
Staff member
Staff member
of the
PWSD
stay
family member
Grade and gender
length of time
score
PWSD
in the unit
caring for the
(in
PWSD in years
years) Mrs Flower
F
83
7d
3.5
Daughter
Staff Nurse (F)
3.5
Mrs Gardener
F
90
7a
2
Daughter
Care Assistant (F)
2
Mr Artist
M
90
7c
1.25
Daughter
Care Assistant (F)
1.25
Mrs Walker
F
78
7c
3.5
Husband
Care Assistant (F)
3.5
Mrs Musician
F
86
7c
3
Daughter
Senior nurse (F)
3
Mrs Cook
F
84
7c
2
Daughter
Care Assistant (F)
2
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I begin each case study with a short biography of the person with severe dementia (FAST 7) informed by family and staff, with some data from care notes. I then explore the perspective of the person with severe dementia by using data from the observation periods, rating scales, routinely gathered data, field and analytic notes. The perspective of the family member and the staff member are reported individually using the data from the interviews. Using codes derived from Lawton’s framework I present the process and findings as I progresses through each case study data set. I then report on the process of elaborative coding and the resultant findings for each individual case (see figure 5.2)
Figure 10: The Case Report
Biography A day in the person's life now The perspective of the person The perspective of the family member The perspective of the staff member Data sample using Lawton's framework Elaborative codes and categories Findings
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5.3. Case study one: Mrs Flower Figure 11: Mrs Flower's Participant Characteristics Case
Gender Age of
study of the PWSD 1
F
FAST
Length
Relationship
Staff
Staff
the
scale
of stay
of family
Grade
time
PWSD
score
(years)
member
and
caring
gender
(years)
Staff
3.5
83
7d
3.5
Daughter
Nurse (F)
5.3.1 Biography Mrs Flower was brought up from a young age by an aunt and her childhood was not particularly happy; she left school as soon as she was old enough to go to work. She married and had one daughter. Retiring at sixty, together with her husband, she spent much of her time arranging flowers for the local Catholic Church and attending community events.
Her home was very
important to her and she liked it to be comfortable and welcoming. She was a woman who liked a routine and was both independent and single minded. After her husband died she was diagnosed with dementia and the situation deteriorated very quickly. She had to move to sheltered housing but began to wander out from her home and her demands on her daughter became so intense that she could no longer go to work and was being disturbed day and night. The decision was made that Mrs Flower would move to a care home. She went with her daughter to visit a number of these and current care environment selected. After some initial difficulty in settling her daughter believes she has been happy there. Mrs Flower was an avid churchgoer and throughout her illness she attended church. She continues to be seen weekly by a local nun and accepts communion each time. During the last three and a half years Mrs Flower has become progressively impaired, physically and mentally. She is non-verbal now and as she had never been a lady who had a very mobile facial
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expression, her non-verbal communication is extremely limited. The staff member describes her as requiring full support from staff in all aspects of her daily life. She has a number of health related conditions including Alzheimer’s disease, an underactive thyroid, osteoporosis, high cholesterol levels and depression and a range of medication is given to treat these. She has little movement in her left arm and finds it difficult to keep her head upright. 5.3.2 Quality of Life: Mrs Flower’s Perspective I begin to explore Mrs Flower’s perspective here by showing a pie chart derived from a 24-hour record completed by the staff member of how she spends her day (see figure 5.4). I then explain my findings from the periods of observation including her movement chart and concurrent field notes (see figure 5.5). Finally I provide a brief overview of the routinely gathered data and rating scales. Daily Activity Mrs Flower spends more than half of her day in her bedroom and the remainder in the sitting room. Intimate care is carried out in her bedroom and this includes washing, dressing and showering. Eating, drinking and social activities happen in the sitting room (see figure 5)
Figure 12: Daily Activity: Number of hours spent in each activity
Sitting room, in chair 5
Eating and drinking , 4.5
In her bedroom, sitting, resting or sleeping 11.5
Intimate care, 3
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Figure 13: Example observation period: movement record and field notes Participant Date /time Setting Response EYES Open Closed TRUNK Relaxed
Mrs Flower 09/08/10 From 5.00 - 5.05pm Sitting room 1m 2m 3m 4m 5m Field Notes 1m Watching nurse standing at medicines x x x x x trolley until her head drops to her chest. Looks out of the window briefly.
x
x
x
x
Restless
x
Jerking/ twitching Tense UPPER LIMBS Relaxed
x
x
x
x
x
x
x
x
x
x
x
x
Plucking Twisting Striking Tense LOWER LIMBS Relaxed Restless Kicking Twisting Tense HEAD Upright
x x
Tilted forward
x
Tilted back EXPRESSION Smiling Frowning Grimacing None
x
x
x
x
x
2m Head drops. She is sitting in an upright chair with wooden arms and holding a paper napkin. Her eyes move to various parts of the room and to the windows facing outside 3m Her head moves up and down continually and she has great difficulty keeping her head up today. It is very bright outside, hot sunshine and the room is very warm. She is looking at various residents who are sitting around her. She glances at each in turn then her head drops. Her foot jerks and her slipper slides of her left foot. She does not seem to notice this and there is no reaction. She does not look down. 4m Her head moves constantly right to left when she has it upright, she does not maintain focus on any particular object or person 5m Her mouth moves and she opens and closes it but she makes no sounds. This happens three times then her head drops again.
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During the observation periods the example chart (figure 14) shows that Mrs Flower has very little movement in her lower body and left arm and shoulder. Her main independent movement is in her right arm and shoulder, her head and her upper torso. Her most active and obvious movement is of her head. Her head is at rest positioned facing down, it is not clear if this is due entirely to osteoporosis or other conditions that have not been investigated. She is able to lift her head and can hold it upright for some minutes and then she allows it to fall. She can also move her head in a limited fashion from right to left. She moves her right hand, arm and shoulder freely and purposively to touch or hold objects. She looks around her continually when awake, moving her eyes and head to follow people and objects until they leave her field of vision. She watches staff walking past, she watches me writing at a table and she also watches for example the window blind flapping in the breeze. Some of these movements have sound and others do not. She reacts to her name and looks up at the staff member but she does not look when other residents’ names are called. She does not try to speak to anyone. On the few occasions when staff approach and try to talk to her saying, for example, “How are you?” She looks intently at the person’s face but makes no response verbally or nonverbally. The staff member then moves away. She touches with her right hand both purposefully and as a response to stimulus. For example when her nose runs she wipes it with a tissue, she pushes her glasses up onto her nose and she brushes crumbs from her skirt. She accepts objects from the staff, such as a cup or napkin. When they approach her with the hoist to move her from her chair to her wheelchair she raises her hand to hold the hoist until she is in the chair then releases. Routinely Collected Data and Rating Scales Her care notes contain information collected when she came to live in the home three and a half years ago and include her personal details, likes and dislikes. The remainder contains information about the previous few months, with that from the period between kept in the nursing station filing cabinet.
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Her notes are based on her activities of living and are a guide for staff. Reports are brief and contain words such as “bright today” or “a settled day” Rating scales completed with the senior nurse are the Abbey pain scale indicating that Mrs Flower experiences mild chronic pain and scores 6/18. The Barthel Index places her at the extreme end of dependency with a rating of 5/100. The NPI NH has 10 domains of neuropsychiatric symptoms and she has a zero score in all but two of these D. Depression/ Dysphoria, and G. Apathy/ Indifference, at a mild to moderate level. 5.3.3 Quality of Life: Daughter’s perspective Mrs A’s daughter is an only child and her mother is a widow with no siblings. The daughter and her husband have joint Welfare Power of Attorney. In the past decisions could create conflict with her mother and during the dementia journey there were periods of distress for both of them. Now that her mum is in the care home, she tries to make decisions that protect her, editing the information she gives when she visits and extends this to other visitors who come to see her. In using this approach to support her mother she believes there is a positive long-term impact on her well-being and quality of life. Her mother has become increasingly tearful as the condition has progressed and she has episodes of crying now, which care staff explained as part of the deteriorating clinical picture of dementia. However she feels that this increasingly emotional state is affecting her quality of life and this her daughter tries to alleviate by editing information “If she is calm when I am leaving, then she is not getting stressed out and chances are she might eat her dinner, she might go into her bed and she might have a reasonable night and she’ll get up in the morning and have another reasonable day” Despite saying she has no reason to doubt the staff member’s explanation for her mother’s increasingly emotional reactions, she still finds it difficult to be cheerful and positive at every visiting period and when she becomes upset she sees this reflected in her mother’s response. She increasingly thinks that her mother connects with her own emotional reactions and that this makes her upset.
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“I think I don’t want her to see, I don’t like getting upset because I go “oh I’ve upset her” and you don’t want to. You just want everything to be fine.” She can tell how her mother is feeling despite her lack of speech by watching her behaviour, reactions and responses. “There was a wee, it’s her eyes, I can tell by her eyes. It’s the way her eyes, not the way they used to be but there’s a wee sparkle, a wee life about them” She is able to contrast this with a day when she feels her mother is unhappy. “Not making any attempt to lift her head up. Her hands are lifeless, her whole body is lifeless, there’s nothing”. Any reaction or response is seen as some form of communication, no matter how small this might be. Any response is seen positively and she believes that she has learned to develop an understanding of her mother’s residual forms of communication. Her mother is able to communicate choices. “If we give her something she doesn’t like she will spit it back out. Oh she is quite clear in what she likes and what she doesn’t like, and we know” She considers her mother is aware and has an understanding of some things that happen and also some things that she is told by others. She wonders if her mother can think and remember what is going on. “Because I do think there is still something there. She can’t communicate to us, but in her head there is something, there is still something living in there, that is, and she understands some things you know” 5.3.4 Quality of Life: Staff perspective The staff member has been caring for Mrs Flower for over three years and has observed the changes in her condition. When she explains how Mrs Flower is cared for she compares her to when she came in to the home. She believes that she knows when Mrs Flower is happy or unhappy. She thinks Mrs Flower accepts that staff wash and care for her and she makes no resistance. She shows no pleasure or displeasure during care episodes and tries to help where she can. One of the main difficulties she experiences is Mrs Flower’s lack of facial expression and the lack of any obvious physical 113
response to her approaches and communication. She finds it hard to know what would be most helpful when caring for her unless Mrs Flower is distressed. “There’s nothing to read from her face, but when she is angry you can see from her eyes, the facial expression. It goes (she screws up her eyes and tightens her mouth)” She explains that Mrs Flower has no means of communication and feels that she cannot tell me very much about her as a result. “I don’t know whether that is because of the pain or anything, the restriction to move her head. Anyway she just lifts her head and look and looks at you and there is nothing in her eyes and then take her head away” One aspect of Mrs Flower’s life has been constant and that is her religious conformance, and staff try hard to support this and it recurs throughout the interviews. “She likes the visit from the church, the nun comes to visit. She likes that. She likes the holy communion every week”
5.3.5 Analysis Lawton’s Framework Having described the perspectives of the three participants I began analysis using the lens of Lawton’s framework to begin developing my case study findings. I returned to the raw data and sifting through each unit of data in turn I began using the codes previously developed and outlined in chapter three. I examined each item of data using these codes, for example an extract from the non-participant observation field notes was coded thus: “Wipes her nose with a handkerchief/ smoothes her hair/ brushes her lap” (2C). This code alludes to the dimension of 2. Subjective quality of life, and the domain of C. Sense of aesthetics. Figure 5.7 shows an example of the raw data captured from Mrs Flower’s case study and organised within Lawton’s framework. These data examples are short representative patches of data from a range of sources within the data set for this case study. (Appendix 11) contains an set of extracts as an example of a data set for one case study of Mrs Musician. 114
The data source abbreviations are shown below.
Data source
Abbreviation
Interviews with family member
Family member
Interviews with staff member
Staff member
Non participant observation
Observation
Observation field notes
Field notes
Rating scales
Scales
Routinely gathered data (e.g. care notes)
Routine notes
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Figure 14: Sample of analysis using Lawton's Framework
1 Behavioural competence (BC)
2 Perceived quality of life (PQOL)
3 Psychological well being (PW)
4 Objective environment (OE)
A
A
Feeling of belonging
A
A
B
“I don’t think she is orientated to place the way she sits and looks at the people a strange, a strange, what do you call it the look the look is strange to everybody…… she does not like anybody here just sits and stare at the people, if you talk to her she just stares so I don’t think she realises that she is in a care home” Staff member Enjoyment of activity
Physical health “I’m thinking myself if I was having the deformity, I should, when I lift my arm, I should have pain but I don’t know if she has pain, nothing no sign of pain or anything like that. She doesn’t make any sign, any sign of pain or anything. No complaints at all” Staff member
B
Activities of living and selfcare “She always sits forward and her head hanging, hanging forward so it is quite hard to feed her but she manages even now she tries to eat herself. Yes she manages to eat herself” Staff member
“Now what you give her she takes whatever you do she is fine. She accepts what she gets”. Staff member
Positive and negative affect “I said to her on Monday you’re getting a wee bit cheeky and she was kind of smiling and that’s the first time I’ve seen her smiling for a while”. Family member
B
Emotional expression “She can be very emotional sometimes, she broke her heart the other day, on Mother’s Day, when the family visited her and we noticed that she was in tears. She was so, so upset. The daughter was also very, very upset”. Staff member
Material possessions “…and she has all the statues in her room. I don’t know whether she prays. Everything in her room is very religious”. Staff member
B
Social support “She was crying and crying it was awful, so we just sneak away we don’t even say cheerio we just sneak out. The girls distract her and we go away”. Family member
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C
Use of time.
C
Long somnolent period, place is quiet late afternoon, she is drowsy and dozing for about 30 minutes. Looks up at any noise briefly, then she puts her head down again. Smell of food as the trolley appears and rattle of wheels. Her head comes up quickly and she looks over at this Observation
D
Cognitive functioning “Perhaps inside her head she is communicating with herself. She could be saying her prayers, she could be sitting thinking, oh that looks nice over there she can’t tell you. She is communicating, yes she is trying her best”. Family member
Sense of aesthetics.
C
Wipes her nose with a handkerchief/ smoothes her hair/ brushes her lap Observation
Mood
C
Rating scale shows a zero score in all but two of these Depression/ Dysphoria and Apathy/ Indifference at a mild to moderate level. Scales
Interpersonal network Daughter is her next of kin and with her son in law has power of attorney/ only visited by daughter, son in law and grandchildren Routine notes
Takes antidepressant Routine notes Bright in mood x 13 during one month of notes. Routine notes D
Spirituality “She likes the visit from the church, the nun comes to visit. She likes that. She likes the holy communion every week Staff member/ artefacts
D
Social engagement Two members of staff sit beside her, they talk to her “How are you?” and one strokes her hair. She makes continuous eye contact but they move away after a minute. Observation “Sometimes she will not appreciate that because it will be noisy sometimes the other residents may be shouting and running about I don’t that will be a good environment for her because she is that kind of person so she goes to bed early so that might be that that will
D
Living accommodation Tactile: plastic chair with wooden arms and a cushion under one arm, wheelchair padded arms and seat Usually faces away to look out of the window. Dining spaces around the walls so she moves from armchair to dining chair. Field notes
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be ok for her, she’s away from all the noises”. Staff member E
Social behaviour Sitting at the table waiting for her meal and looks from the resident sitting at her right to the staff moving around. Resident next to her laughs and she looks at her Observation
F
Psychiatric symptoms Rating scale shows a zero score in all but two of these Depression/ Dysphoria and Apathy/ Indifference at a mild to moderate level. Rating scales Takes antidepressant medication Routine notes
E
Family and friends
E
“Only when the family comes in she looks at them and when they go she bursts into tears” Staff member
Physical safety “Because we have to keep her with us so we can observe her and ... when she is with us she is at very high risk when she is alone in her room but sometimes still she gets a chance in the room with the telly on and she can sit and watch the telly but we are really afraid whether she will fall or something like that she might say oh I don’t like to sit in this noisy place she might say that”. Staff member
I would like my daughter E………to be contacted if I am ill (sic) Routine notes
F
Aesthetics Her wheelchair has a padded seat and arm but she is only transferred on this. She sits on a plastic covered chair with wooden arms She can touch her body and the chair The room smells of food at mealtimes Field notes
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G
Choice “Whatever you give her she eats and you just explain to her before you give her anything. I never see her not eating anything. Whatever you give her she just opens her mouth and take it. Before when she was not in this position. Before she was not able to say any more, before that she used to just walk away from the food if she doesn’t like it, but now because she is not able to say anything she just accepts whatever you give her”. Staff member
H
Privacy “She didn’t like people asking her too many questions. Then when you sit and talk to her you see that sometimes she liked peace and calm and she would say, leave me alone, that way she doesn’t say to you but I felt many times when we sit and go and chat or speak to her, she look, she would listen to you for a couple of minutes then she would grab you”. Staff member
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Elaborative Coding In this case study an example of the process of elaborative coding is expressed from 1b Activities of living and self-care where observations describe her striving to maintain her head upright and making small movements to reposition herself to sit upright. 2c Sense of Aesthetics when she is seen to wipe her nose, adjust her glasses and smooth down her skirt 4h Privacy where staff perceive her as continuing to react as she has done since she came in to the home, despite her deteriorating condition over the years. She always preferred to be private and used to spend a lot of her day in her room. This data is encompassed in an elaborative code of:
Maintaining her self
Together with related elaborative categories this was aggregated to a finding called “You have to think she is ok”: understanding needs. The elaborative categories and findings are expressed in figure 17, then each finding is reported in more detail.
Figure 15: Elaborative codes and findings Elaborative codes She keeps herself to herself She is who she was before It was what she used to do Preserving her dignity
Key findings The same as before: knowing the person.
Active watching Maintaining eye contact Trying to help There is something there
“I’m still here you know”: making connections.
Nothing in her eyes Strong emotions Making no complaint We try to understand Making some choices Maintaining her self
“You have to think she is ok”: understanding needs.
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The same as before: knowing the person This finding captures a sense of the importance of knowing Mrs Flower before she reached this point in her life. For the staff member this involved explaining about her knowledge of Mrs Flower since she came to live in the home. The behaviours that were seen at that time are reiterated in the way she is now. “She was not a person, she was not a chatty person, she kept herself ….. I never seen her talking to any other people, never made a conversation with anyone, I never seen that.” (Staff member) Her daughter also looks back over her relationship and reinforces some of her mother’s attributes and strengths, which she considers to be reflected in the way she is now. “That’s her, that’s my mother, a strong woman. She tries to make the best of everything. She understands probably and tries to watch what is going on in a way, to make sure whoever is in there is looking after these other people correctly.” (Family member) One of the strongest aspects of Mrs Flower’s life was her religious connection and these are reflected up to the present day. Her room is filled with religious statuary and photographs and staff try to support this when Mrs Flower cannot maintain these activities. “Because of her disability she cannot use the rosary beads but she still gets when she goes to bed the girls use the holy water on her bed they will use that.” (Staff member) Some of her previous behaviour and responses appear to be reflected, albeit in a much reduced way. For example, she is described as a lady who liked to be tidy and presentable all her life and her early days in the home show the same pattern of behaviour. “She used to go with the comb in her hand, her hairbrush. She always go in front of the mirror to comb her hair, then go back to lunch, then go back again, and go to the toilet to the mirror and doing that” (mimes brushing her hair) (Staff member) Now her severe mobility and health issues considerably reduce her behaviour, yet she continues to show actions such as smoothing and tidying her hair and brushing crumbs from her lap. 121
Brushes her lap with her hand and pushes her glasses into position, brushes her hair with her hand off her forehead. Readjusts her glasses and lowers her head to doze for a few minutes. Wipes her nose with a handkerchief/ soothes her hair/ brushes her lap (Observation) “I’m still here you know”: making connections Mrs Flower continually lifts her head to look at her surroundings. She watches people, staff and residents and static objects; she will watch wheeled equipment being moved or glance at the window. However she is more active in her watching when there is movement and mainly where staff are moving around. She will watch residents but shows less interest and looks away more quickly. When staff move she will watch until they move out of her range of movement and vision. Her head moves up and down continually, can hold it up for a few minutes then it drops to her chest and she immediately raises it again, does this for most of the observation periods, watches actively when her head is raised (Observation) Staff members rarely approach her to speak directly, other than when they are helping her with her activities of living. One those occasions she looks directly at their eyes all the time they talk to her Two members of staff sit beside her, they talk to her “How are you?” and one strokes her hair. She makes continuous eye contact but they move away in less than a minute. (Observation) During a SONAS© group (a type of multisensory stimulation), she is reported by the staff as no longer able to engage yet she watches the staff member conducting this and others in the group continuously for over 20 minutes. During a multisensory group nurse speaks to her using her name and she maintains eye contact each time, until her heads falls to her chest (Observation) She is considered to be entirely dependant on the staff but she is also able to help herself eat and drink, can move her arm into her sleeve and holds on to equipment used to move and transport her. “She doesn’t actually use her left side, the right side she manages to lift her arm and help you put her clothes on” (Staff member)
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“She lifted her head on Monday and she put her hand out and she took the spoon and there was a wee bit of sparkle about her” (Family member) Despite her ill health, dependence and severe stage of dementia, both her daughter and the staff member allude to her being aware, and attribute to her a degree of reasoning, memory and understanding that is incongruent with her expected cognitive ability. “She can’t communicate to us, but in her head there is something, there is still something living in there that is and she understands some things you know” (Family member) “She was watching that and we just told her that’s the Pope visiting the country she actually she burst into tears so she must have thought that. She still might be conscious I’m far away I can never...”. (Staff member) “You have to think she is ok”: understanding needs Despite the reflections of the staff member about Mrs Flower’s apparent understanding, she considers that it is very difficult to know how she is feeling as her face is generally without expression. “Anyway she just lifts her head and looks at you and there is nothing in her eyes, nothing, no anger, no smile, no happy” (Staff member) The only recognisable response reported is when she is crying or grimacing when she is angry. “There’s nothing to read from her face, but when she is angry you can see from her eyes, the facial expression. It goes”.. (she screws up her eyes and tightens her mouth) (Staff member) This strong negative emotional response distresses her daughter who finds herself deeply affected as her mother had never expressed strong emotion in her life. “This crying thing that’s what’s getting me. I never ever saw her cry, even the day when my dad died, she just didn’t cry but now she is crying real tears” (Family member) This perception by staff that she cannot communicate positively leads to a belief that as she accepts care or food and drink without negative responses, then she is content.
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“We think she is alright with that she accept what she gets I think that for ……… she doesn’t say no to anything no reactions” (Staff member) There is a risk inherent in this approach, as she experiences mild chronic pain as defined by the Abbey Pain scale and the staff member expects that some movements she finds will find painful, such as dressing, but in the absence of a positive response from her they do not act on this. There was no routine assessment of pain and although prescribed pain relief she had not been given these over the previous period. Conversely it is clear that there are clues understood to have meaning, despite these being subtle and more difficult to discern. “If you give her something to eat and you ask her, is that good, she would just stare at you for a few minutes like that. I felt that that means she likes it. If you ask her if she doesn’t like it, she just looks at you and turns her head. You know the way she turns her head away, you know that you are ignored”. (Staff member) Her daughter is clear however, that not only can her mother make choices, she is able to discern these and bases this on both her past knowledge of preferences and current behaviour. “It’s just the meringues, she likes them. She eats them all and she doesn’t pretend. If we give her something she doesn’t like she will spit it back out” (Family member) Staff on the unit make an effort to provide care for Mrs Flower but are increasingly finding her lack of response limits what they believe they can do to support her. Her daughter emphasis on her mother’s strong religious affiliation is reflected in her care notes, her daughter’s conversations with staff and in Mrs Flower’s room which has numerous religious statuary, photographs and artefacts. The staff member reflects this aspect of Mrs Flower’s life as of importance to care staff. “She cannot use the rosary beads but when she goes to bed the girls use the holy water on her bed (Staff member) Despite being unsure about whether or not she understands these religious practices such as receiving communion from the visiting nun. “That’s a difficult question I don’t know because she opens her mouth for everything you give so maybe I’m not sure” (Staff member)
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5.3.6 Mrs Flower’s Summary These findings reflect the expressed needs of Mrs Flower’s daughter and staff member to know her as a person with past preferences and needs as current information about her is so limited. Both try to make connections in individual ways and sometimes this is successful and sometimes not. They strive to understand her needs and return again and again to her previous expressed preferences and behaviours to try and discern these. Mrs Flower despite her ill health, dependence and severe dementia continues to respond to others and actively watches her surroundings throughout the day. She allows others to move and care for her, responding with movement and acceptance of objects. She responds with active movement to some aspects of her body by brushing down clothing and adjusting her posture, hair and glasses. Her daily life focuses on sleeping, eating and drinking, sitting in her chair watching what is around her and experiencing personal care.
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5.4. Case study two: Mrs Gardener Figure 16: Mrs Gardener’s participant characteristics Case
Gender Age of
study of the PWSD 2
F
FAST
Length
Relationship
Staff
Staff
the
scale
of stay
of family
Grade
time
PWSD
score
(years)
member
and
caring
gender
(years)
Care
2
90
7a
2
Daughter
Asst. (F)
5.4.1 Biography Mrs Gardener was born to a farming family in Ireland. Married in her early thirties she moved with her husband to Scotland, where she sadly lost her first child, a boy, but went on to have four daughters. Her husband died 25 years ago and she then lived alone with support from her daughters until her move to care. She loved her garden throughout her life and she grew fruit and vegetables as well as flowers. She was a sociable woman who loved interacting with people; a homemaker and always busy. When her own children were a little older she began fostering children. Described by her daughter as a ‘naughty gran’ she was a great source of fun to all her grandchildren. She was a devout Roman Catholic and was very involved with her local church activities. However she was full of fun and loved music and dancing. She never lost her love of Ireland and her daughter believes that she pined to go ‘home’ to that country all her life. Her dementia was insidious at first and her daughter gradually became more involved with her daily life. Eventually the family had to take over her garden and she became progressively vulnerable. One of the first signs of dementia was an increasing anxiety and she began to hide money around the house. Later she began to have visual misperceptions such as believing that people in photographs around the house were looking at her and trying to tear these up.
Her move into care was precipitated after she began
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welcoming in groups of young people and her family felt she was no longer safe at home. The first home was not specifically for the person with dementia and she became increasingly hostile. She was treated with antipsychotic medication and then had a fall. She moved to the current home at this time. She was then hospitalised after developing a serious and severe skin condition called Pemphigoid. She had a long and painful recovery when she also developed recurring urinary infections. Her daughter now monitors her carefully and she checks with staff that all her mother’s treatments are carried out. She has become increasingly fragile and has bespoke seating to help her position as she slips down off the chair to the floor when using a standard chair. She is still able to say a few words such as ‘yes’ and ‘no’ and responds to her name. The staff member describes her as dependant but able to help herself with her food and drink. She is still a lady who smiles and laughs easily, however she becomes very distressed when she is being helped with intimate care. In addition to her risk from her skin condition and urinary infections she also has vascular dementia, osteoporosis, arthritis and a previous fracture of her right lower arm. She is prescribed a range of medication to treat these and is given oral medication covertly, in food, as she will not accept these. This is agreed and overseen by her daughter, staff and the pharmacist. 5.4.2 Quality of Life: Mrs Gardener’s Perspective I begin to explore Mrs Gardener’s perspective here by showing a pie chart derived from a 24-hour record completed by the staff member of how she spends her day (see figure 5.4). I then explain my findings from the periods of observation including her movement chart and concurrent field notes (see figure 5.5). Finally I provide a brief overview of the routinely gathered data and rating scales. Daily Activity Mrs Gardener spends more than half of her day in her bedroom and the remainder in the sitting room. Intimate care is carried out in her bedroom
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and this includes washing, dressing and showering. Eating and drinking and social activities happen in the sitting room. Her daily activity record shows that she has had a short period described as a one to one with staff and a visit from a local Salvation Army group (see figure 5.10).
Figure 17: Daily activity: number of hours spent in each activity
Visit from
Sitting in chair 3.5
One to one with staff 0.5
In bedroom, resting or sleeping 12.5
Eating and Intimate care 2.5
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Figure 18: Example observation period: movement record and field notes Participant Date /time Setting Response EYES Open Closed TRUNK Relaxed
Mrs Gardener 22/07/11 From 11.05 - 11.10am Sitting room 1m 2m 3m 4m 5m Field Notes 1m Has a book with photographs of x x x x x flowers. Holding this and looking at the page, then looks out of the window as visitors leave by the front door x x x x x
Restless
2m A visitor’s mobile rings and she makes no response, she looks at me and smiles. The looks back at the book
Jerking/ twitching Tense UPPER LIMBS Relaxed
x
x
x
x
x
Plucking Twisting Striking Tense LOWER LIMBS Relaxed
x
x
x
x
x
x
x
Restless Kicking Twisting Tense HEAD Upright
x x
Tilted forward
x
Tilted back EXPRESSION
x
Smiling
3m She looks at the picture of the flower and strokes the page with her fingers. Looking to right an left at flowers on opposite pages 4m Glances over at me then her gaze goes back to the book. When she looks over at me she smiles. Then holding my gaze she laughs and begins to make soft murmuring sounds. She only looks away when I put my head down. 5m Looks at the book again and begins to turn the pages one at a time and looking at each of the flower pictures.
x
Frowning Grimacing None
x
x
x
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It may be seen from the observation chart (figure 5.11) that Mrs Gardener has a limited range of movement in her lower body and trunk. She is only seen to move her legs once. She moves her head and arms with more facility. Her face is relatively mobile and she can be seen to smile, laugh and frown. She is able to repeat simple single words spoken directly to her and can respond with “yes” and “no”. She responds to her name. She is able to hold a cup and drink without help but needs to be prompted at times. She can use a spoon to eat and is independent with food she can hold in her hand. She spends her day looking out of the low window in front of her and is often the only person in that part of the room. She appears to watch any movement inside the room or outside the window. During one of the observation periods she was given a book with large, bright flower illustrations and she spent over an hour turning the pages, looking at the illustrations and occasionally tracing the outline of the flower with her finger. She was also given a book about her local area on another occasion but looked at this and then put it on her lap. When she is sitting and has no occupation she smoothes her clothes and readjusts and tucks in her skirt. She had beads around her neck on one occasion and she manipulated these for some time until she took them off and put them on the table. Mrs Gardener looked at me regularly and smiled, she smiled at staff when they approached. She rarely looked at other residents unless they spoke loudly and did not smile at them at all. There was a range of noises in the room and she responded only to staff close by and speaking directly to her. She could say “yes” and “no” to their questions and staff accepted what she said, for example when asked if she wanted her book and she said “no”, they removed it. Routinely collected data and rating scales Her care notes contain information collected when she came to live in the home two years ago and include her personal details, likes and dislikes. Her notes are based on her activities of living and are a guide for staff. Reports are brief and reflect the plan of care for each activity. The repeated reports are that she is “bright” and “settled”, however a note appears regularly about
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her behaviour when receiving intimate care. She is then described as “resistive” and shouts at staff. Rating scales completed with the senior nurse are the Abbey pain scale indicating that Mrs Gardener experiences mild chronic pain and scored 7/18. The Barthel Index places her at a marked degree of dependency with a rating of 20 /100. The NPI NH has 10 domains of neuropsychiatric symptoms and she has a zero score in all but three of these. A. Agitation/Aggression, scored at a moderate level. E. Anxiety and G. Apathy/ Indifference, scored at a mild level. 5.4.3 Quality of Life: Daughter’s Perspective Mrs Gardener’s daughter compares and contrasts various stages of her mum’s dementia journey and explains some of the periods where her mum faced tremendous challenges both in her mental health and her physical wellbeing. These caused her great mental distress and fear and later when she was physically ill, great pain. Her current state is seen as a good place to be, explaining that she has been free from pain and infections Her emotional state is also different now and she is no longer experiencing the fear she showed at home living on her own. “We are happy that she is contented now she’s not frightened For her condition her quality of life is better than I could have provided at home”. In some ways the severe stage of dementia and the profound memory impairment is perceived as protective. “With dementia every day is the first day so there’s not that you are tired of your surroundings well there is for the poor wee souls wandering up and down all the time but with mum its not as if there is a boredom She’s not really got the memory to get bored”. Mrs Gardener can still say a word or two although her daughter does not depend on speech to understand her, as she is more likely to speak when she is not happy about something. “ If she’s unhappy everything will be no, no, and she might say “see him over there”. She will start a slight bit of anxious behaviour, then it would be a couple of words of a sentence”
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In contrast when her daughter senses she is happy this is described as less likely to be language based. “well she has twinkly eyes, she smiles when she is happy she smiles and sometimes she will be sitting giggling a wee girly giggle but it’s lovely” Mrs B’s communication is variable and depends on her physical state, including her current response to eating where she stores food in her mouth and then cannot speak. “there would be too much in her mouth before swallowing so I thought it was but seemingly it is recognised part of the demented state. But that’s definitely a barrier to getting her to speak to you” Her daughter believes that she can tell when her mother is engaged with her and when she is not able to do so. “You can still tell whether she is in a good mood or a bad mood. If she is still interested in you being around or if she is kind of past that stage maybe she is too tired”. There are ways of encouraging connection. These are based on other communication approaches rather than language. Touch, music and visual cues are part of the repertoire her daughter uses. “Touching her maybe gets that bit more connection and we usually take her a magazine or she has books of flowers……when I take her into her room we play music and she will la la la along she likes the wee jig sounds” 5.4.4 Quality of Life: Staff Perspective The staff member has looked after Mrs Gardener since she moved there and provides direct care every day she is on duty. She is aware of a number of issues about Mrs Gardener’s physical condition that provide a challenge to caring for her. She describes her being unable to sit up on the toilet, which makes her unstable, slipping down in her chair with the risk of falling on the floor. She also describes the painful skin condition Mrs Gardener experienced and how carefully staff monitor her now. One of the concerns is when she holds food in her mouth and does not swallow this. When staff members provide intimate care, Mrs Gardener resists and calls out and they respond
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by trying to reassure her and doing care quickly. She does consider that Mrs Gardener might be in pain when she is moved and that they do all they can to address this. “if we were getting her washed she would call you everything under the sun but that is just part of the job. And I would say, “You don’t like that no no, but I need to do that honey because it’s your hygiene we need to keep up” but we would change the subject and we’d say we’ll get you done quick” Otherwise she perceives Mrs Gardener to be a lady who is rarely upset and is usually settled and content. “Never really seen her upset because any other time she would have a wee laugh with you or you would say “You ok?” and she would say “Yes I am fine”…… I think she is quite content as long as you are not moving and huckling (moving) her about” However she finds it difficult to tell how Mrs Gardener is feeling or whether she is happy or unhappy. “That’s a hard one how can you actually tell if I mean she will smile… but I don’t know if it’s just her way of communicating with any of us” She believes that her understanding is limited but she can make some choices “I think M understands to a certain extent I can ask her would you like a drink and she can tell me yes or no” However she talks about her response to routine visits from a nun, Sister M, very differently, attributing more complex recognition, memory and understanding to the visits. She also believes there is a response when Mrs Gardener’s daughter visits and she sees her “face light up” when she arrives. However she finds it difficult to understand that the family want Mrs Gardener to be seated looking out of the window. She believes it would be better to be seated with the group of other residents. “If she is at the window a lot she’s isolated. That’s my opinion…. We used to bring them round (the group of residents) and we done it a couple of times……..and the family didn’t want her there, they wanted her at the window”
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When asked about Mrs Gardener’s quality of life she is clear that while she thinks that while she is content her situation could be improved. In addition to seating her where she was within a larger group, she also thinks that Mrs Gardener needs to be outside more. “She is getting well looked after. My thing is she is never really over the door…… How would you feel yourself if you were stuck indoors all day all night”
5.4.5 Analysis Lawton’s Framework Having described the perspectives of the three participants I began analysis using the lens of Lawton’s framework to begin developing my case study findings. I returned to the raw data and sifting through each unit of data in turn I began using the codes previously developed and outlined in chapter three. I examined each item of data using these codes, for example an extract from the non-participant observation field notes was coded thus: Eating from plate with spoon, still scraping spoon against plate even when empty. Staff passing lifts the plate, she holds on to it for a moment then let’s go and she watches her taking it away. (1b). This code alludes to the dimension of 1. Behavioural competence and the domain of B. Activities of living and selfcare. Figure 5.13 shows an example of the raw data captured from Mrs Gardener’s case study and organised within Lawton’s framework. These data examples are short representative patches of data from a range of sources within the data set for this case study. The data source abbreviations are below. Data source
Abbreviation
Interview with family member
Family member
Interview with staff member
Staff member
Non participant observation
Observation
Observation field notes
Field notes
Rating scales
Scales
Routinely gathered data (e.g. care notes)
Routine notes
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Figure 19: Sample of analysis using Lawton’s Framework
1 Behavioural competence (BC)
2 Perceived quality of life (PQOL)
3 Psychological well being (PW)
4 Objective environment (OE)
A
A
A
A
Physical health “Unfortunately I think relatively recently in the last four of five months she started they call it pouching started holding her food in her mouth, holding saliva in her mouth and even when she is speaking to you it all closes down”. Family member
B
Activities of living and self care Eating from plate with spoon, still scraping spoon against plate even when empty. Staff passing lifts the plate, she holds on to it for a moment then let’s go and she watches her taking it away. Observation
Feeling of belonging “So her memory of is going a bit but she is in company she likes she is not being terrified of where she is she has all these interest she has always enjoyed”. Family member
B
Enjoyment of activity “She would sit and clap her hands and tap her feet and things like that. The Irish music she loved that kind of thing. Just the same she likes to look through a lot of pictures”. Staff member
Positive and negative affect “She’s certainly responsive to some things There are days when she is not really with you, you can tell she’s in a world of her own, she maybe starts that way if she’s been left dreaming or looking out of the window when you come and its a wee while before she will warm up”. Family member
B
Emotional expression “She will smile and I’ll say look at that. “Oh your beautiful smile” and “it’s nice to see you smile” but I don’t know if it’s just her way of communicating with any of us”. Staff member
Material possessions She has a number of religious photos and artefacts in her room She has magazines and books She has her own made to measure chairs Observation
B
Social support “She is on the two low dose things the steroid and the antibiotic at night and it just keeps her nice and stable bit I am watching like a hawk”. Family member
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C
Use of time.
C
“Dementia every day is the first day so there’s not that you are tired of your surroundings well there is for the poor wee souls wandering up and down all the time but with mum its not as if there is a boredom”. Family member
D
Cognitive functioning
Social behaviour “She didn’t really like around a lot of people. She liked to be just sitting and especially looking out of the window”. Staff member
C
“She always kind of fired stuff into her mouth and there would be too much in her mouth before swallowing so I thought it was… but seemingly it is recognised part of the demented state. But that’s definitely a barrier to getting her to speak to you”. Family member D
“Now even when other people had slipped out of her memory, she still remembers the priests”. Family member Has a diagnosis of vascular dementia Routine notes FAST score 7a Scales E
Sense of aesthetics.
Spirituality “If we talk about her religion to her she’ll correspond she will communicate with us. Because we’ll say Father (RC priest) is coming in to see you ‘oh good’”. Staff member
E
Family and friends Two of her daughters are named as having power of attorney for her Routine notes
Mood
C
“I think she is happy and content I think again she is maybe in pain but again she will let you know apart from that she is quite content”. Staff member NPI NH indicates mild depression/ dysphoria Scales
D
Social engagement
Interpersonal network “Her family come in and they normally take her through into her room and put the music on and they blether about the past and things like that”. Staff member
D
Looking out of the window then turns to me, smiles then laughs, she does this a number of times over the observation periods. Is watching people moving around the car park then turns to look at me, points at me and then at herself and smiles. Observation
Living accommodation Tactile: Padded chair, which was made for her. Sits looking out of the window and she tends to eat with a table placed in front of her. Field notes
E
Physical safety “I mean you sit down yourself you’ve folded your legs and your foot gets numb, or your legs sore or your back’s sore. I mean you can imagine what it’s like for an older person
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then we’re watching how we move her …..we are trying to move her in the safest way”. Staff member F
Psychiatric symptoms
F
NPI_ NH agitation/aggression described as mild and causing minor disruption to staff, mild depression/dysphoria and moderate apathy/indifference neither causing any disruption to staff Scales
Aesthetics Ensure there is music on that she can hear and is suitable for her age Position her so she can look out of the window Protect her clothes with an apron Provide good standards of personal hygiene and dress Routine notes
G
Choice Teatime carers ask “are you hungry?” we’re going to put you in the chair for your dinner. “No” “Do you want to stay there” “aye” “Ok will I put your beads in your room” “aye” Observation
H
Privacy Mrs G is never alone during the day and needs two carers to wash toilet and dress her.
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She is only alone at night in bed Observation
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Elaborative coding In this case study an example of the process of elaborative coding is expressed from 1a Physical health where information from family, staff and care notes describe a number of painful conditions experienced by Mrs Gardener, however this are expressed in the pain rating scale as mild chronic pain and in the medication record she has received no analgesics for the past ten days. In contrast there are repeated references to pain in 4e Physical safety when staff wonder if she is sliding down in the chair because she is in pain and in 3c Mood where she is described as happy and content apart from her pain. Personal care is a particular catalyst and staff identify that she does not like being moved, so they try and provide care that is over as soon as possible, while understanding that this may cause pain. This apparent acceptance that pain may be expected to occur does conflict with the attempts of staff to maintain her in comfort. This data is encompassed in an elaborative code of:
We do what we can
Together with related elaborative categories this was aggregated to a finding called, ‘Do not disturb: experiencing unwelcome care’. The elaborative categories and findings are expressed in figure 5.14 and reported in more detail below. Findings Figure 20: Elaborative codes and findings Elaborative codes Leave me alone Relief when care is over It has to be done We do what we can
Key findings Do not disturb: unwelcome care
She switches off Her eyes tell you She gets keyed in A fabulous remnant
“On standby”: connections are made
I want to do this She has a voice
Trying to tell you: recognising need
experiencing
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Considered a choice We live in her past So much has disappeared Hope remains Knowing through care
“Echoes of the past”: seeing the person
Do not disturb: experiencing unwelcome care Mrs Gardener reacts badly to being helped with personal care such as washing and dressing. Despite reports of her disliking water over her head or being in a shower in her care notes and from her daughter’s report she is given a shower by staff. They are aware of this but are unable to see any other way to care for her. “She doesn’t like getting handled She just wants to sit there and do her own wee thing, read her book, put her meal down to her, but you need to take her to the toilet That’s the worst part of it that’s the worst part of her life is this keeping her clean and changing her and that she lashes out at you”. (Staff member) As a result this aspect of care is carried out quickly and there is relief for all concerned when this is finished. “Again we just say we won’t be long. “Listen, your daughters coming in”, or we change the subject and try and get it done as quick as we can. Once she’s ready I’ll say that you’re looking lovely this morning then the smile comes on. It’s immediate then, after”. (Staff member) The staff member appears to feel helpless, as she is aware that Mrs Gardener is distressed by the care episodes, but feels there is little choice. “She is roaring and she doesn’t like it and she is hitting out at you so you are just saying we are trying to help you and things like that. It must be really sore it doesn’t matter any time we move her she is always, she moans at us. I don’t mean moan like talk she is just always making that moaning sound (carer groans loudly to illustrate) that’s the only way I can describe it.” (Staff member) There is a sense that there is no choice about the care and that they do all they can to make the experience as easy as possible for her.
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“We have to monitor because we cannot leave her if she is in the situation she is in, if she is dirty at all we have to clean her and she doesn’t like us doing that either, she doesn’t like being cleaned”. (Staff member) Staff approaching to provide care does not appear to frighten her however. Asked if she wants the toilet, smiles. Two staff lift her to her feet, says “aye” to all their instructions. Laughs towards them. (Observation) Her daughter expressed the view that her mother’s memory impairment is something that is closely related to her ability to have a good or bad quality of life in that moment. “Every day is the first day and every experience is the first experience. There is a sense that quality of life is in the present moment”. (Family member) “On standby”: connections are made The daughter’s efforts to maintain communication pathways is focussed on recognition that when her mum has a period when she is not being engaged by others, she disengages and her daughter has to be patient and keep trying to engage until she ‘warms up’. This is achieved mainly by sensory means such as touch, music and encouraging her to look at pictures. Whether Mrs Gardener is engaged or not is recognised by her eyes. “You can see a glazing over of her eyes she’s always been able to communicate with her eyes, she is a twinkly eyed old lady and we can see there is no one there. You just know she’s shut down now you just know, but it’s not all the time, there’s definitely still connections to be made”. (Family member) Her daughter also describes a deeper connection, which is more about sensing her mum’s readiness to be engaged and persisting in efforts to reengage with her. “You can see her, whatever recognition centres are there, get keyed in to you and of course. You go away to get her a book and its like she’s not as away but she will be like “Oh it’s you” and then your back in there”. (Family member) This deep connection is not language based but almost entirely non-verbal and takes time and attention.
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“I haven’t heard her respond verbally But she will come into the conversation and engaging with you. You can tell she is actually focussing on you rather than looking past you”. (Family member) Staff members, on the other hand, are less challenged by communication issues and are clear that they feel able to engage with Mrs Gardener. Her communication with other residents however is limited. “but as long we are face to face and we are in contact, you are at her level. She is fine with all the carers. We have a wee resident who walks about and tries to talk but she isn’t really interested.” (Staff member) ] Despite having to work to connect with her mum in the present, there are other times when there is a glimpse of Mrs Gardener as her daughter remembers her “She always had a ready smile on her face, that was her personality but its near enough now as if someone’s told her a joke, it’s a real good old chuckle that she does….which is fabulous, it’s a fabulous remnant of mum”. (Family member) Trying to tell you: recognising need Mrs Gardener is able to express some choices in her daily life, not only does she respond to care that is unwelcome but also she can also provide cues to staff about her preferences. Nurse approaches with yoghurt and tries to feed her with it, she pulls her head away and says “no” the nurse fills the spoon and gives it to her and she eats from it. She scrapes at her other hand with the spoon as the nurse holds the yoghurt pot. The nurse again fills spoon and she eats. Nurse asks if it nice, she says “nice”, nurse goes to get a napkin and Mrs Gardener reaches for the yoghurt and spoon. (Observation) She speaks little but her few words are heeded and responded to by staff Responds to the occasional questions from staff with yes and no. For example carer asks, “Do you want potato and cheese bake?” She says no. (Observation) Staff can also advocate to others, including family, for her when they feel that there is another option in her daily life that she is not realising. “I mean I think she has a choice … I mean we try to give her a voice and we try to say would she maybe benefit coming into the circle, which we have done. If the family come in and say “why is she there, I don’t want
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her there I want her over there, she likes to look out of the window” but I think they are forgetting her condition and all that. I know it’s hard for them but would they not prefer their mother to be in the company”. (Staff member) Conversely some staff can override her choices at times where other meet her wishes or are at least willing to negotiate Nurse asks if she wants her glasses on, she says “no” but she puts them on her anyway. (Observation) Carer asks her if she wants her book, she says ”no” and she puts it away Nurse asks, “can I give you an apron?” she says ”no” it will keep you clean “aye”. (Observation) This issue of choice has changed for Mrs Gardener and there is some comparison about past and present ways of approaching this. “Give her choice and a lot of the time she would just look, but she cannot tell you. Before she could before she could tell you, but not now. We have to make that choice and make her look respectable”. (Staff member) “Echoes of the past”: seeing the person Her family describe a sense of living in the past where they do not remind her about family members who have died and talk with her about her life as though she were still in Ireland. This protective approach is used to try and make her happy. “They are all alive for mum so we live in her past, it’s what she recognises and she’s not going to be challenged by sad thoughts”. (Family member) These efforts are instinctive for her daughter as she is not sure what her mother’s reality is and she is aware of how much she has lost in terms of memory and understanding. The losses are not all perceived negatively as there appears to be some protective element. “It is very, very difficult to know how mum thinks now because there is so much has disappeared but she is a lot more contented than she had been when she was going through the dementia”. (Family member) Her daughter hopes that her mother is living in another place and time where she is young and happy.
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“I would think most of her thoughts are possibly with her Irish life She can no longer respond to where do you come from? Which I think she thinks is a daft question. All her life she pined for Ireland…….Ireland becomes more and more centre stage so kind of half hoping that where she is. It’s Ireland where she is going”. (Family member) For staff there are other ways to see Mrs Gardener and this is expressed through the daily contact they have through the care they provide “She likes books, magazines. Her family come in and they normally take her through into her room and put the music on and they blether about the past and things like that but again I honestly I really don’t know a lot about her past. I only know by the care I have been giving since she came in here”. (Staff member) There are plans of care and a life story constructed by the family. Staff have little time to read these and perhaps see some value in these “If there is anything and if we have time I mean for a start I can’t take her care plan home if I wanted to. We have wee things in the room. The families were taking their history and it’s kept in the drawer. I can come in if I have time and I can read about them. It gives me the information that I can talk to them and I can interact with them and I can say certain things”. (Staff member) However sometimes the contact is opportunistic and instinctive, happening in the moment “She had this one (soft toy) and it was like a dog and she used to talk away to it and she would tell it to sit down, and you’d say was it bad and she’d say been a bad boy today and I’d say I think it’s needing a cuddle so you could interact with her that way and she would love and oh she would clap it, this was her wee dog”. (Staff member)
5.4.6 Mrs Gardener’s Summary Mrs Gardener has had considerable challenges in her pathway to the present and a number of painful conditions continue to affect her daily life. She responds to personal care with distress and while staff try to manage this pragmatically they are aware of her pain and know that their care is unwelcome. Her daughter is concerned that her mother is still connected with her and would like more time spent on one to one communication and activities
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while appreciating that this is not possible. She makes connections by using the senses and can recognise when this is working. Staff connect by the daily care activities but the connections are more difficult. They wish her to become involved in group activities and are frustrated by the expressed wish of the family for Mrs Gardener to be positioned to look outside the window of the home. She is recognised as being able to make some choices in her daily life but the staff response to this is variable and she can become frustrated in her efforts where the staff member does not validate her choice. Mrs Gardener is cared for in the present by staff and they have little to draw on from her past while her daughter is working hard to maintain her life in the place she feels her mother is happiest. Mrs Gardener herself shows little sign of discontent and smiles readily in response to staff that approach her, even making some attempt to engage with others in the environment.
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5.5. Case study three: Mr Artist Figure 21: Mr Artist’s participant characteristics Case
Gender Age of
study of the PWSD 3
M
FAST
Length
Relationship Staff
Staff
the
scale
of stay
of family
Grade
time
PWSD
score
(years) member
and
caring
gender
(years)
Care
1.25
90
7c
1.25
Daughter
Asst. (F)
5.5.1 Biography Mr Artist has lived alone since becoming a widower 22 years ago. He is a father of 12 children and has a number of grandchildren and great grandchildren. He had a variety of jobs including gardener and groundsman for a local factory, as a TV engineer and before he retired as a gardener at the local hospital. He took early retirement although he was reported by his daughter as being in good health most of his life. He was a bowler, played violin and was an enthusiastic amateur artist. After his wife’s death he found it difficult to settle and moved a number of times, settling down for ten years in a local house. His life was governed by routine and he attended mass every day, then going for his shopping. He drove his car until the age of 82. His daughter believes that he began to develop dementia over 10 years ago, when he began to mislay items in the house and his routine began to change. She began to find out of date food in the fridge and his personal appearance began to deteriorate. He gradually became more impaired and his memory became worse. He withdrew and did not respond to people when they spoke to him. Finally, he began falling and was not able to use his electronic alert system. By the time he moved to a care home he was dependant for all his activities of living on his daughter and family. After a short stay at another home he moved to this one at his family’s request.
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The staff member describes him as requiring assistance with all activities and although he can stand he cannot walk more than a few steps. He can drink holding a cup. He has become less communicative since he came in and now rarely speaks. She describes him as making a low growling sound when you make eye contact with him and describes him as a ‘gentleman’ in all other aspects of care. Despite this he resists intimate care and she believes he prefers a male to attend to his personal needs. She emphasises his religious devotion and his enjoyment of western films. He has a number of health related conditions including vascular dementia, ischaemic heart disease, hypothyroidism and depression. He receives a range of medication to treat these conditions. 5.5.2 Quality of Life: Mr Artist’s Perspective I begin to explore Mr Artist’s perspective here by showing a pie chart derived from a 24-hour record completed by the staff member of how he spends his day (see figure 5.4). I then explain my findings from the periods of observation including his movement chart and concurrent field notes (see figure 5.5). Finally I provide a brief overview of the routinely gathered data and rating scales. Daily Activity Mr Artist spends more than half of his day in his bedroom resting or sleeping and the remainder in the sitting room. Intimate care is carried out in his bedroom and this includes washing, dressing and showering. Eating and drinking and social activities happen in the sitting room. He is noted in his activity record as attending mass, this was held in the small unit next to the one he lived in. He is reported to watch TV, either in his room where he has his own TV set or in the sitting room where there is a communal one. He is also described as listening to music which is ambient music played for all the residents on a CD player. There is no record of what he watched or listened to during these periods (see figure 5.1
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Figure 22: Daily activity: number of hours spent in each activity
Listening Attending mass to music 2 1 Watching television 3 Eating and drinking 3.5 Intimate care 2.5
In bedroom resting or sleeping 12
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Figure 23: Example observation period: movement record and field notes Participant Date /time Setting Response EYES Open Closed TRUNK Relaxed
Mr Artist 21/10/13 From 3.50 – 3.55pm Sitting room 1m 2m 3m 4m 5m Field Notes 1m Busy room, staff are moving around x x x x taking other residents to the toilet. x He looks as they move past him.
x
x
x
x
x
Restless Jerking/ twitching Tense UPPER LIMBS Relaxed
x
x
x
x
x
Plucking Twisting Striking Tense LOWER LIMBS Relaxed
x
x
x
x
x
Restless Kicking Twisting Tense HEAD Upright
x
x
x
x
x
x
x
x
x
x
Tilted forward
2m He is struggling to stay awake, eyes closed. 3m There are two ladies in the chairs next to him and one is talking continually, he looks at her each time she speaks. 4m Nurse sits down at the other side of him and says his name. “…., something to eat?”. She then spoons some yoghurt into his mouth. He looks briefly at her then just looks ahead and opens his mouth each time the spoon approaches. 5m She gets up and walks away to get a cloth for his mouth and stops to talk to a carer. Sits back down “Right …..” and continues to spoon the yoghurt
Tilted back EXPRESSION Smiling Frowning Grimacing None
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The observation charts (figure 5.17) shows that Mr Artist has restricted movement but can make small movements to his body and head. He often makes small adjustments in his position and crosses and uncrosses his legs. He can move his arms and lift a cup but is assisted fully with his food. He spends some time rolling and unrolling the hem of his pullover. His face rarely shows any expression and he does not speak. He did once make a low growling sound when staff were interacting with him. He spends his day looking at those around him, particularly if they are moving or speaking. He looks at the television regularly, more if the people on the screen are moving. He did not respond to ambient noise in the room. He was able to react to staff by making eye contact if spoken to. Routinely collected data and rating scales Mr Artist’s care notes are mainly based on his activities of living in relation to his need for care and interventions. Some likes and dislikes are noted from his daughter’s reports when he moved there. The reports are a reflection of the plan given for each activity and show that staff have complied with the care plan for each. Rating scales completed with the senior nurse are the Abbey pain scale indicating that Mr Artist experiences mild chronic pain and scores 6/18. The Barthel Index places him at the extreme end of dependency with a rating of 5 /100. The NPI NH has 10 domains of neuropsychiatric symptoms and he has a zero score in most of the domains except C. Agitation/aggression, where he is described as resistant to personal care and although this happens frequently it is not considered a problem for staff in his care. D Depression/ dysphoria, when he is described as “looking sad”. E. Anxiety, where he is described as “looking anxious”. G. Apathy/ indifference, where he is described as having no interest in what is going on around him 5.5.3 Quality of Life: Daughter’s Perspective Mr Artist’s daughter is one of 12 children and while she has power of attorney for him, most care decisions are consultative with most of the rest of her siblings. She now believes that the home is a good place for her father to
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live and that he is well cared for there. It was a stressful decision and not all the siblings agreed initially and as the main carer she found it hard to accept that she could no longer care for him in his home. “I just feel, I don’t mean a responsibility but I just feel… I don’t want to feel I am shutting him away.” She had cared for him for a number of years while he was living in sheltered housing. Eventually providing care for all his activities of living. As his condition worsened, she worried about him continually, particularly as he had begun falling. Eventually medical staff prompted the decision for his move into care. “So I just felt with him having the fall in the, in morning, like that we went in, we got the doctor and the doctor did say, it’s something you, it’s your worst nightmare put them in these places but at the same time what's, what’s the alternative?” Although it was suggested that there was no option, she does appreciate that she could no longer have managed his care, as her dad now needs two staff to move and wash him. She believes that he has settled in the home and it has become familiar to him. “I think in the home’s just familiar surround now because I heard G. (her sister) saying as well do you find when you take him back in that he's kind of, not got a smile but a kind of, I'm back” However she does regret that he is no longer in a family setting. She tries to continue contact by taking him out in the car to familiar places. She can no longer take him to her home unless her husband is there, as she cannot help her dad to the toilet without help. “But I feel, I feel that he's kind of, I say this but then maybe not, I feel he's kind of missing out on the kind of family environment, do you know what I mean?” She mourns her father’s condition and explains the incremental loss she feels as this progresses “It’s, when I say he's still my daddy, he's rotting away if you know what I mean. It’s, it’s hard, his body’s there but his mind is totally away, totally away.”
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Yet she believes that her dad knows her and has some understanding when she speaks to him. She does, however perceive him as being different, not only in his physical state but in his changed behaviour and personality. “it’s no nice to say that but I feel my daddy’s disappeared.” She finds the lack of communication from her dad the most difficult aspect of his condition and as he does not smile she can only depend on him nodding his head. “I could be maybe talking away to him and I'm getting nothing, he just stares or he maybe, he maybe look at you or he maybe put his eyes somewhere else and I get no response and then I’ll give him a wee tap like that, I’ll say did you hear what I said there, are you listening to me and sometimes I’ll get you know a wee nod as much as aye, I can hear you, you know.” He responds when she kisses his cheek but she is not sure how she knows this, as there are no real signs. Despite this she does believe that he is content as he is not agitated. She only sees him like this when he needs the toilet but otherwise he is peaceful. 5.5.4 Quality of Life: Staff Perspective The staff member looks after Mr Artist every day she is on duty and she says that she does everything for him. She provides personal care, ensures he eats and drinks well and cares for his clothes and possessions. Although he is very dependant she is keen to encourage him to do what he can and encourages him to drink independently and stand and walk a few steps when moving him. “Aye, cause I always feel as if you really need to let him do things like that because if you're going take it off him he’ll never use his arms again.” When he moved to the home he was able to say a few words and was more mobile than he is now. However, she reminds me that he is over 90 years old and becoming tired. She remembers that he settled well into the home and that the family had arranged his bedroom with his own furniture and she thinks that helped him to feel comfortable.
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“I think this is what it is because he feels it’s his own, his own wee house.” He is a religious man she says and when the religious sister and priest come in he reacts and responds to both of them. “Aye, sits there and pays attention to every word that she’s saying cause she brings a wee stereo and they have their music on, they sing, they have their wee jug of water with their wee tumblers, for their, is it their communion thing?” She believes that she understands some of his communication patterns, which ranges from a growling sound when she makes eye contact with him to facial reactions to food he likes or dislikes. She finds this communication hard to describe. “Aye, aye but you can see with his eyes, like his eyes light up. It’s just weird, it’s so hard to describe, that’s what I had to try and describe in my SVQ, how a facial expression and see trying to write that down.” She believes that his quality of life is good, particularly because his family visit so often and take him out for the day. All generations visit and the family dog. His daughter brings food he likes and helps him to eat. His room is the focus of these visits and she sees this as his home. “and his room is basically like a wee second house, honest to god, it really is, it’s beautiful his wee room. It’s packed but it’s beautiful.” She compares him to other residents and perceives his assets as having a family who visit, some communication skills, being able to do some things for himself and being able to sit on the toilet. “I look at Eddie and I still think he's still there, he's got his family, his family adore him to bits.”
5.5.5 Analysis Lawton’s framework Having described the perspectives of the three participants I began analysis using the lens of Lawton’s framework to begin developing my case study findings. I returned to the raw data and sifting through each unit of data in
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turn I began using the codes previously developed and outlined in chapter three. I examined each item of data using these codes, for example an extract from the family member’s interview: “Well this is, this might sound a bit strange but sometimes his lips will go and his hands and to me he's saying the Rosary” (2D). This code alludes to the dimension of 2. Perceived quality of life and the domain of D. Spirituality Figure 5.19 shows an example of the raw data captured from Mr Artist’s case study and organised within Lawton’s framework. These data examples are short representative patches of data from a range of sources within the data set for this case study. The data source abbreviations are shown.
Data source
Abbreviation
Interview with family member
Family member
Interview with staff member
Staff member
Non participant observation
Observation
Observation field notes
Field notes
Rating scales
Scales
Routinely gathered data (e.g. care notes)
Routine notes
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Figure 24: Sample of analysis using Lawton’s Framework
1 Behavioural competence (BC)
2 Perceived quality of life (PQOL)
3 Psychological well being (PW)
4 Objective environment (OE)
A
A
A
A
Physical health “He chokes so he's on….on a textured diet and ‘Thick And Easy’ in his juice as well”. Staff member
Feeling of belonging “Do you know that’s his familiar surrounds now. When you take him back he knows people’s faces and he knows the surrounds and all that now”. Family member
Positive and negative affect Well he’ll respond more to maybe a wee kiss. There’s, I would say there’s a wee more of an awareness there like when you say to him right daddy I'm going away now, I'm going to do this or I'm going to do that. Family member
Abbey Pain scale score 6/18, mild chronic pain Scales
Material possessions He has a bedroom with personal possession and furnishings from his previous home. He has works he has painted and photographs of the family. He also has religious artefacts on all the surfaces. Field notes
Has bilateral cataracts, wears glasses Routine notes
B
Activities of living and selfcare Start off in the morning we’ll knock his door, we’ll go in, see if he wants up, sometimes it’s hard to tell but if he's lying wide awake then we’ll get him up because he's got his
B
Enjoyment of activity He enjoys getting out, I know he enjoys getting a wee run in the car. We usually maybe take him down S………park. He’ll do that in the room, looking directly at it and maybe even listening to it at times. (TV)
B
Emotional expression it was this growl but then again looking back he couldn’t communicate with you so that was his way of letting me know I'm not happy but then when he seen that I was a bit upset it was as if, he looked at me and as if oh it’s you A…. and he did settle
B
Social support Most weeks you're talking about twice. Family member His daughter is really good with him. Staff member
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medication to get. He needs assisted with his breakfast and stuff like that so we’ll get him up, shower him, shave him, just all your daily stuff. Staff member C
Use of time.
Family member
C
The activities lady…she sits down and she does like painting and stuff like that with them as well but up here’s no interest, they’ve no got the attention span for it anymore. Staff member
D
Cognitive functioning FAST score 7c Scales Has certificate of incapacity for all care and treatment Routine notes It’s just the dementia side of it that, obviously like
Sense of aesthetics.
back down again. Family member
C
He was good at his painting, artist…. Things like that…..he played the violin. Family member
D
Spirituality Well this is, this might sound a bit strange but sometimes his lips will go and his hands and to me he's saying the Rosary. Family member He's a, he's a catholic man. Loves his communion with Sister Maria, absolutely loves
Mood
He has 12 children. Routine notes
\
No I don’t think he's unhappy. I think, I think it would’ve showed in my daddy if he was unhappy. IFM
D
Social engagement Sometimes you get a wee answer. Sometimes he just sort of looks right through you as if you’ve got a wee hole in your head. He’s no great at conversations or anything cause he’ll no really answer you. Staff member
Interpersonal network I talk about the family, what's happening, you know if there christenings or somebody’s getting married, things like that but a lot of the time I just sit with him but I know he's quite relaxed. Family member
D
Living accommodation They’ve actually made it like his own home and his room is basically like a wee second house, honest to God, it really is, it’s beautiful his wee room. It’s packed but it’s beautiful. Staff member
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dementia, it doesn’t matter how many times I say I'm L…. I'm your carer, it sort of goes past them, doesn’t it? Staff member E
Social behaviour He's a gentleman, do you know what I mean? He's never been rude or anything like that. He has his moments the same as all of us and maybe he’ll have a wee growl into your face but that’s the dementia side of it. Staff member
F
Psychiatric symptoms The NPI NH has 10 domains of
that. Staff member
E
Family and friends
E
He loves his family. See his daughters and his sons and that coming in, that just absolutely makes his day and he loves the wee dogs as well. Staff member
Physical safety You don’t have an alternative, you know what I mean. You either, you leave him there where he's going to be a danger to himself and things like that but I just felt my daddy needs the 24 hour care. Family member Care notes say he needs a wheelchair and he can walk slowly with two staff and does not need a hoist Assessed as needing bedrails and at high risk of falls Speech and Language assessment suggests pureed diet and thickener due to choking risk Routine notes
F
Aesthetics But I feel, I feel that he's kind of, I say this but then maybe not, I
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neuropsychiatric symptoms and he has a zero score in most of the domains except C. Agitation/aggression, where he is described as resistant to personal care and although this happens frequently it is not considered a problem for staff in his care. D Depression/ dysphoria, where he is described as “looking sad”. E. Anxiety, where he is described as “looking anxious”. G. Apathy/ indifference, where he is described as having no interest in what is going on around him. Scales
feel he's kind of missing out on the kind of family environment, do you know what I mean? Family member
G
Choice He liked to sit in his room with his TV which we do that at night time sometimes, we’ll put him into his room maybe after dinner, we’ll put him into his night things, sit him in his chair, loves his own company, sits there engrossed in the television and he’s fine. Staff member
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H
Privacy You can’t pull his pants down or you can’t fix his pad properly or anything like that and he must feel quite conscious, he’s a man obviously and we’re women. Staff member
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Elaborative coding In Mr Artist’s case study data set, an example of elaborative coding comes from examples of spiritual support by the family when his daughter spends time praying with him 2d Spirituality and 3d Social engagement and the positive response staff see when he is visited by the local priest or nun 3a Positive and negative affect. There are artefacts that support his beliefs in the form of pictures and rosary beads to support prayers 4a Material possessions and 4f Aesthetics. This data is encompassed in an elaborative code of:
“I think he is praying”.
This maintenance of his previous religious beliefs and behaviours are aggregated with related categories into a finding called: ‘”He can still do things”’: maintaining the person’. The elaborative categories and findings are expressed in figure 5.20, then each finding is reported in more detail. Findings Figure 25: Elaborative codes and findings Elaborative codes He tries to help you A bit of fresh air He is praying Better than most My daddy’s away In his own wee world A lightness in his face It takes time “He would be cringing” “Don’t touch me” Hiding himself His own wee house Knows his surround Happy to be back
Key findings “He can still do things”: maintaining the person He has his moments: connecting with his world “Holding on like grim death”: the experience of unwelcome care “A familiar surround”: a kind of contentment
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“He can still do things”: maintaining the person Mr Artist is perceived by the staff member as a helpful person in terms of most of the care given to him. He will respond to staff as they help him dress and eat and she wants to do all she can to maintain this ability. “He’ll put his hands into his shirt and that for you. See as soon as you … putting your socks on……. if you're no going keep him using his legs he’ll lose, he’ll lose the power”. (Staff member) Not only is he able to manage some of the physical aspects of his life but he is also seen to maintain some of his previous interests and activities. He is believed to enjoy watching and he is taken to his room regularly to watch western films on a large TV. “Cause his eyes do not move off that screen. Doesn’t move off the screen constant sits glued to it and his eyes are; he looks as if he's more alert”. (Staff member) He is often placed next to the large TV screen in the sitting room and he watches this intermittently. Any movement catches his attention and he is less interested in the static figures on some programmes. Adverts that are fast moving cause him to watch the screen intently. The game show is static and the adverts are very fast moving. News programme comes on the he looks away when the presenter is on and back at the screen consistently when there is movement. (Observation) His regular trips out in the car with his daughter are highly valued by staff and family. Both consider he benefits a great deal from being outside the home and being with his daughter. Both believe that the physical benefits from being outside bring him great benefit. His daughter is also keen to maintain his contact with his previous activities and those places he knew well before he moved. “Take him down by the park, down by the water bit and sit in the car for a wee while but if it was a good day and he was good I would take him in the wheelchair”. (Family member) One of the important maintenance issue identified is his continued religious life. He was a life long active church member and the home continues to actively engage him in church services and visits from both the local priest
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and nun. The staff, while not understanding this practice of religious observance, ensures that he attends and are impressed by his response to the services and people involved. “I don’t know he's just like, it’s as if he's more engrossed in what she’s saying because he knows that’s, that’s his religion”. (Staff member) His daughter finds communicating with her father difficult and uses religious practice such as praying and the ritual of saying the rosary to engage with him, despite being unsure about his level of understanding. “I tend to do the rosary with him you know because I know sometimes it’s as if he's maybe trying to say to you, although he's not communicating, I’ll say do you want to say a decade of the rosary daddy, you know and sometimes he’ll, he’ll nod”. (Family member) Mr Artist is considered by staff to have a better quality of life than some of the other residents by virtue of his maintained skills, perceived interests and beliefs and because he has a large family who are very involved in his life. “He's got a better quality of life than most of them in here. There’s a certain amount where I think they're on the same level and then you’ve got so many of them that have just no really got much of a life”. (Staff member) He has his moments: connecting with his world His daughter does express the feeling that she has lost the father she had known all her life, he has lost so much of his ability to communicate and respond. She considers that he is deteriorating in all aspects of his life, yet she thinks that he still knows her and she makes every effort to maintain engagement with him. “Does my daddy know me? I think so, I think so and maybe I'm just hoping he does, but aye I think, I think he still knows me”. (Family member) Staff find him distant at times and more difficult to connect with. At these times he is not alert. This is linked to his advanced age and his frail physical condition. There is a sense that he is not unaware but not engaged with the external environment. “He just goes into like, like his wee world. He just sits and stares into space, do you know what I mean. It’s as if his minds on overtime and he’s 162
just sitting….. It’s hard to know what he's sitting thinking of”. (Staff member) Even when he is alert there is little movement in his face and body. He rarely smiles however both his daughter and staff believe that they can read his face and body language to a degree. They depend on this to know how he is feeling and whether or not he wants or needs anything “No, I wouldn’t be, say it was a smile. There might be a wee lightness in his face or whatever”. (Family member) On those occasions where he is not engaged with others, it can take time to succeed in gaining eye contact with him. When carers do not make the effort he makes no effort to look but sustained eye contact, touch and speech by the person will eventually help him make and continue eye contact. The staff member talks to him and makes eye contact continuously, encouraging him to try more food. After about 15 minutes he becomes more alert, puts his hand down and looks at her opening his mouth fully for the food and looking at the spoon. He watches her very intently now and she maintains eye contact and speaks quietly to him. He re-positions himself to face her. (Observation) “Holding on like grim death”: the experience of unwelcome care Mr Artist was cared for at home by his daughter and she was reluctant to allow others to do this. She feels that being washed and assisted to carry out his daily activities is likely to be an embarrassing and undignified experience for her father who, she believes, would greatly resent being cared for by others. “He would be, if you were spoon feeding him like that he would be, oh he would be cringing”. (Family member) This is particularly reflected in his response to being washed and moved. Daughter, staff and observations identify Mr Artist’s ‘growling’ sound. This sound he creates is like a low growl and is understood differently. His daughter perceives this as an expression that he is unhappy about what is being done. “It was this growl but then again looking back he couldn’t communicate with you so that was his way of letting me know I'm not happy”. (Family member) 163
Staff perceive this variously as a response to eye contact from staff or perhaps to express his belief that he was “the boss” and not they. He is not considered to be expressing pain but he growled when he was raised to his feet. During observation periods he growled when moved by staff from his chair to his wheelchair. Being transferred by two staff from his chair to a wheelchair and he grabs at them and appears afraid. They tell him not to grab and move his hand away. He growls once and when he is seated on the wheelchair he is asked if he is ok. His facial expression changes slightly and he appears as though he is trying to smile or speak briefly. (Observation)
Despite the degree of impairment Mr Artist experiences he shows a response to his private parts being exposed while he is washed and his reaction is immediate and creates a tension within his care episodes. Staff perceive that this may be because they are female but in the absence of male carers they believe they have no choice but deliver the care “Uhuh because he’s always holding, see like if he's got his shirt on he always holds it and tries to tuck it between his legs”. (Staff member) “A familiar surround”: a kind of contentment Mr Artist’s bedroom in the home was refurbished by his family to look similar to his previous home and even his fireplace was installed there; together with his own paintings, family photographs and religious artefacts. Staff are impressed by his reaction to this familiar environment and believe this resulted in him settling in to the home and to his apparent ease when he is in his room. “All his own stuff that they’ve brought out his house like wee ornaments, things that came out of his house that he can see that was out of my house and he feels more homely”. (Staff member) His daughter thinks him familiar with his environment in the home beyond his room and sees no difference in his response, whether he is in the sitting room or the bedroom. She does however feel that he has become used to being in the home and is familiar and confortable there.
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“But that’s his familiar faces and his familiar surrounds now….knowing my daddy, he’ll have the sense of security that there’s somebody there for him”. (Family member) She has noticed that when he has been out for the day he appears content both to return and to settle back into the environment. She considered that he appears to be returning to a surrounding that he feels is where he belongs. 5.5.6 Mr Artist’s Summary Mr Artist is settled in the home and his family consider this to be the best place for him in order that his need for care is met. He is perceived as having a number of positive aspects of his life in the home including some retained abilities, his outings and some interests. He also has a large and supportive family and a space of his own that resembles his home. However he finds care that is intimate or intrusive on his person both fearful and embarrassing and this also creates a concern for his daughter who believes her father is distressed by these episodes of care. Staff, while aware of this, accept the behaviour he exhibits as expected from a male resident being cared for by women and either try to ensure a male carer is available or simply carry on with the care. While his daughter is distressed by her perceptions about the father she knew being increasingly lost to her, she continues to use all the approaches she can to connect and engage with him. Staff believe they know him well despite having little knowledge about his past life and use his face and body responses to guide their approach. Mr Artist looks content and at ease in his environment until he is moved by staff when he shows signs of distress by tensing his body and grimacing while making a growling sound. He watches all movement in the environment and on TV and maintains eye contact with those staff who touch him gently, speak directly to him or make direct eye contact.
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5.6. Case study four: Mrs Walker Figure 26: Mrs Walker’s participant characteristics Case
Gender Age of
study of the PWSD
FAST
Lengt
Relationship
Staff
Staff
the
scale
h of
of family
Grade
time
PWSD
score
stay
member
and
caring
gender
(years)
Care
3.5
(years ) 4
F
78
7c
3.5
Husband
Asst. (F)
5.6.1 Biography Mrs Walker has been married for 56 years and has two sons and grandchildren. She was a busy active person and loved to walk and travel. She adored children and apart from her two boys was a loving aunt, one of her nephews continues to visit her weekly. She worked in local banks and shops most of her life. She was not a particularly religious lady, but loved music and sang in a local choir. She was described as easy going and enjoyed having people around. Despite being a physically active and fit lady she was diagnosed with Alzheimer’s disease about six years before and shortly afterwards experienced a stroke following a cerebral haemorrhage. She had right-sided weakness and her eyesight and verbal skills were badly affected, she is registered blind. Her condition deteriorated after this and her husband had to provide more and more care, finally agreeing to help from social services. Following a period of acute illness, his doctor discussed moving Mrs Walker to a care home, following discussion with her sons he agreed to this. She has been resident for over three years and staff describe her as a lady who is completely helpless. She has continued to deteriorate and now has little speech, early stage contractures of her limbs, continual pain which they
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try to control with opioids and other analgesia and has developed seizures over the past six months. In addition she receives medication for osteoporosis, depression, pernicious anaemia, constipation and seizures. 5.6.2 Quality of Life: Mrs Walker’s perspective I begin to explore Mrs Walker’s perspective here by showing a pie chart derived from a 24-hour record completed by the staff member of how she spends her day (see figure 5.4). I then explain my findings from the periods of observation including her movement chart and concurrent field notes (see figure 5.5). Finally I provide a brief overview of the routinely gathered data and rating scales. Daily Activity Mrs Walker spends many hours in bed and the remainder in a custom made chair in the sitting room. Intimate care is carried out in her bedroom and this includes washing, dressing and showering. Her meals are provided either in the sitting room where she is assisted to eat while in her chair, or in her bedroom where she is propped up in bed. She has music CDs in her room and these are played during periods when she is resting. When up out of bed, her chair is placed at the window or facing in to the main sitting area (see figure 5.22).
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Figure 27: Daily activity: number of hours spent in each activity
eating and drinking
Intimate care 3
Looking out of window In bedroom resting or sleeping 14.5
Listening to music in room 1.5
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Figure 28: Example observation period: movement record and field notes Participant Date /time Setting Response EYES Open Closed TRUNK
Mrs Walker 24/05/14 From 12.30 – 12.35pm Sitting room 1m 2m 3m 4m 5m Field Notes Time 1 She is sitting with her eyes closed x and body tensing up. She is crying x x x x quietly not making a noise
Relaxed Restless Jerking/ twitching Tense
x
x
x
x
x
UPPER LIMBS Relaxed Plucking Twisting Striking Tense
x
x
x
x
x
LOWER LIMBS Relaxed Restless Kicking Twisting Tense
x
x
x
x
x
Upright
x
x
x
x
x
x
x
x
x
x
HEAD
2m A nurse approaches and sits facing her, talks to her and rubs her forehead. Mrs Walker tries to speak but no sounds 3m Mrs Walker begins to cry again and her whole body remains tense (she had medication for pain at 12 midday) 4m Nurse is holding her hand and trying to give her a drink of juice. She sips the juice but cries between mouthfuls. 5m Nurse continues to hold her hand making shushing noises and stroking her face. Mrs Walker continues to cry
Tilted forward Tilted back EXPRESSION Smiling Frowning Grimacing None
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As may be seen from the observation chart (figure 5.23) Mrs Walker has periods where she does not move at all. This can be when her body is contracted and tense or when she relaxed and sleepy. At other times she makes almost constant twitching, plucking and scratching movements of her body. Her face is very mobile and she smiles, laughs, raises her eyebrows and opens her eyes and at other times grimaces. Often she cries, ranging from quiet tears to sobs. She can speak but staff do not appear to understand what she is trying to say and her clearest word is “aye”. She does not seem to be able to hold anything when eating and drinking and staff assist her fully with these activities. When staff hold her hand it is limp and she does not grasp. She spends long periods in bed and goes to bed early in the evening. When she is in her chair she looks upwards towards the ceiling, however she occasionally looks at people as they move past. She jolts in her chair at any loud noise but routine sounds do not stimulate any response. When staff approach her she usually smiles when they speak to her and at time laughs and raises her eyebrows. She will respond “aye” when they ask her a question. Routinely collected data and rating scales Her care notes contain information collected when she came to live in the home almost three and a half years ago and include her personal details and likes and dislikes. The remainder is information about the previous few months with the information from the period between being kept in the nursing station filing cabinet. Her notes are based on her activities of living and are a guide for staff. The care reports repeat the directions in the care plan. The Abbey Pain Scale has a score of 12/18 and indicates that she assessed as having moderate pain, which is termed acute on chronic. The Barthel Index places her in the realm of total dependency with a rating of 0 /100. The NPI NH has 10 domains of neuropsychiatric symptoms and she has a zero score in most of the domains except D Depression/ dysphoria, where she is described as crying often. There are no other behaviours indicating depression described here.
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5.6.3 Quality of Life: Husband’s perspective Mr Walker now lives alone near one of his sons. He visits three times a week with either his sons or his nephew. He can no longer travel alone due to health problems and needs to be transported by his family to the home. He supported his wife at home for some years and found home care staff invaluable in supporting both Mrs Walker and himself. He only agreed to the move to the care home after his sons intervened, as his own health was deteriorating. He found the senior nurse in the home very friendly and believes that his wife responded to her. He decided to move Mrs Walker there after looking at other homes and comparing these. This one felt different to him, he “felt quite at home”. Despite his positive reaction, Mrs Walker took time to settle he remembers. “There were quite a few tearful days in M….. “ Now he believes that his wife has settled there. He has Welfare Power of Attorney for his wife, but leaves the regular reviews of her care to his sons. He is not aware of what medication she has and is content to leave all that to staff and his sons. He always visits with them except on one occasion when he went alone. “ I got a taxi up and I had a terrible time with her. That’s one of the days that I didn’t think she knew me and she wondered who was this fella giving her a strawberry trifle” He gets a smile at times from her but usually there is no response and he believes that she does not always recognise him. He sees her deteriorating and finds this very hard to cope with this. “ I was quite down because I thought “God I…, I wouldn’t give tuppence for you tonight”. There’s no reaction” He feels that she knows other people better, such as the staff and responds better to his sons and nephew. He gets upset about the lack of contact she has with the world and is sorry that her sister and friends no longer visit.
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“ there was one friend and she phoned and said R… I can’t go back again. That’s’ not the I… I knew” He believes her quality of life is poor and that she is badly brain damaged, “a vegetable”. He finds visiting heart breaking and prefers to be with his sons who he believes are more positive about their mum. He cannot come to terms with how she was before dementia and the stroke and how she is now. Despite this he knows his wife is still there. “Its not the I… I knew, but it us I…., I know it’s her” His son however will refer to his mum in a more nuanced way and he finds that very difficult to understand. “ P……will say “that was a good visiting hour” or “that was a bad visiting hour” and I’ll say “what do you mean bad, P…..?” Well Mum was tired and there wasn’t much activity there” 5.6.4 Quality of life: Staff perspective The staff member has been caring for Mrs Walker since she moved to the home and explains how she has seen her condition deteriorating over that time. She sees this deterioration escalating over the last six months and explains that Mrs Walker is spending increasing periods of time in bed because she is so sore despite being given pain relief including morphine and as a result she becomes sleepy and uncomfortable in her chair. “Maybe about a year ago, see when she was up longer, we used to sit her to the television, she loved sitting watching the television but as I say it's sort of as the time’s going on now she's getting less interested” She still tries to provide choice for Mrs Walker where she can but finds that her pain and distress governs how much she can do for her. Only in her choice of food and drink is there an opportunity to provide what she wants. Mrs Walker is clear in her wishes especially if she is does not enjoy something. “if you ask her is she enjoying her meals, she’ll tell you, aye. She tells you if she doesn’t want it. Oh, you hear her from W…….. if she doesn’t want her dinner”
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She expresses fondness for Mrs Walker and believes they have a good relationship. She shares some of her musical preferences and makes sure these are provided. Her pain is a source of concern and much of her care is about reducing discomfort for Mrs Walker. 5.6.5 Analysis Lawton’s framework Having described the perspectives of the three participants I began analysis using the lens of Lawton’s framework to begin developing my case study findings. I returned to the raw data and sifting through each unit of data in turn I began using the codes previously developed and outlined in chapter three. I examined each item of data using these codes, for example an extract from the staff member’s interview: “She never used to have photos on that wall. I had said that they’re needing to something on that wall because she looks, so now we’ve got photos on her wall” (4D) This code alludes to the dimension of 4. Objective environment and the domain of D.
Living
accommodation. Figure 5.25 shows an example of the raw data captured from Mrs Walker’s case study and organised within Lawton’s framework. These data examples are short representative patches of data from a range of sources within the data set for this case study. The data source abbreviations are shown below.
Data source
Abbreviation
Interview with family member
Family member
Interview with staff member
Staff member
Non participant observation
Observation
Field notes
Field notes
Rating scales
Scales
Routinely gathered data (e.g. care notes)
Routine notes
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Figure 29: Sample of analysis using Lawton’s Framework
1 Behavioural competence (BC)
2 Perceived quality of life (PQOL)
3 Psychological well being (PW)
4 Objective environment (OE)
A
A
A
A
Physical health It takes her maybe about half an hour to get fully relaxed when she’s in the chair but when she’s in it that’s her, she’s normally fine for a good couple of hours Staff member
B
Abbey Pain Scale 12/18 Scales Activities of living and selfcare Barthel Index 0/20 totally dependant Scales We provide all personal care, all assistance with food. Basically we do everything for Irma really Staff member
Feeling of belonging Yeah. In fact there was one night one of the girls came in, she was finished her shift, she came in and gave Irma a kiss, right see you tomorrow dear Family member
B
Enjoyment of activity But she reacts to the music. She just shows interest. And P…. will say did you like that mum and she’ll go, move her eyes you know. Because she’s got good hearing. Family member
Positive and negative affect I can tell with her face…. her face sort of, she just looks quite down, do you know what I mean? Staff member
B
Emotional expression When her husband goes away the day she’ll probably have a wee cry the day Staff member
Material possessions Has ornaments and pictures from home She has a bespoke chair Field notes
B
Social support We try to, we go up on a Tuesday, I go up on a Tuesday with P… and I go up with G…. on a Friday. Family member
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C
Use of time.
C
That looks as if she is shoved in a room all the time but she needs bed rest that lady Staff member
D
She is humming for some ten minutes, her eyes are wide open and she is looking into space Observation Cognitive functioning
When other people speak near her she briefly looks in that direction and then looks away again When activity increases in the room especially at mealtimes she moves her head from side to side and
Mood
C
See when she’s down, she’s down, see when she’s up, she’s up. She’s that type of person. Staff member
D
Spirituality Church of Scotland not practising used to attend and married there but have not attended for some time Routine notes
E
Family and friends All her, none of her friends go. There was one friend went and she phoned me and said Ronnie I can’t go back again. I can’t, I can’t That’s not the Irma I knew. That's why her sister doesn’t go
D
Social engagement
Interpersonal network She’s always happy with her family. See when her family’s visiting she’s always happy with her family round about her. She likes the company in there Staff member
NPI NH depression/dysphoria 6/12 moderate but up to three times a day Scales
I don’t know what you could possibly do to make her life better because she’s so badly brain damaged. Family member
Social behaviour
C
When you were all singing, she would join in with the singing, loves her music. Staff member
FAST score 7c Scales
E
Sense of aesthetics.
D
She is laughing and moving her shoulders, her eyebrows were going up and down and she maintained eye contact with the nurse who was talking to her. Even when staff moved away she continued to smile and murmur Field notes
Living accommodation She never used to have photos on that wall. I had said that they’re needing to something on that wall because she looks, so now we’ve got photos on her wall Staff member
E
Physical safety At risk of pressure sores Needs two staff to move her and she is a at risk of falls Bedrails in place Hoist to be used Routine notes
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looks around her. Field notes
F
Psychiatric symptoms
Family member
F
Aesthetics For her bedroom wall. Wee glitter hearts Well glittery, it sparkles and it sticks out and what woman's no into glittery and sparkly things, do you what I mean? Staff member
NPI NH depression/dysphoria 6/12 moderate but up to three times a day Scales
G
Choice She'll not open up her mouth for another one. She'll tell you no. If you try and put that spoon in to her mouth it's a “no” and that's it Staff member
H
Privacy Ensure privacy deal with her quietly, gently and confidently No male carers please Routine notes
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Elaborative coding In this case study an example of the process of elaborative coding is expressed from 1a Cognitive functioning. Although her husband believes she is brain damaged and cannot understand what is happening, when the staff sing to her she begins to make noises and they talk to her in response and she giggles, staff describe it as her eyes lighting up. 1e Social behaviour. During observation periods she is seen to respond to staff who approach her where she moves her mouth and shoulders, staff believe she is singing and dancing 2b Enjoyment of activity. She loves music according to family and staff and when her favourite tunes are playing she moves her shoulders in rhythm with the music This data is encompassed in an elaborative code of:
Her way of dancing
Together with related elaborative categories this was aggregated to a finding called: ‘A different bond: feeling connected’. The elaborative categories and findings are expressed in figure 5.26, then each finding is reported in more detail. Findings Figure 30: Elaborative codes and findings Elaborative codes Not the woman I knew Don’t expect miracles Leave it to the experts She is a lady Her way of dancing We do everything for her Her eyes light up Smiles to tears It’s pot luck It all hurts She is far gone Careful care
Key findings What do you expect?: recognising the person A different bond: feeling connected “Down and up”: changing needs “Take the pain out”: complex care needs.
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“ What do you expect?: recognising the person Mr Walker and staff perceive Mrs Walker differently. In addition Mr Walker’s sons and nephew give him another viewpoint. Reconciling these is a challenge for him and he grieves for the person he knew. Mr Walker sees her as a dying person and is trying to resign himself to this “I was quite, quite down because I thought God I…., I wouldn’t give tuppence for you tonight. There’s no reaction but P….. says dad, you worry about things that, mum’s fine She’s just tired”. (Family member) Staff see her as a person who is alive and retains some autonomy “I feel as if sometimes she knows cause she is still there, do you what a mean? She'll tell you when she's no wanting food and stuff like that, she'll say no. (Staff member) As a result all involved in her life respond to her in a different way. Her sons can see her as presenting in different ways and they respond accordingly. They are able to respond to those days she appears to be better. Mr Walker is unable to comprehend this as he sees her as unchanging and describes her as a “vegetable”. He sees her as unchanged in the present but changed from the past, he responds to her in the same way all the time. He cannot see differences in her. “P……. will say some days that was a good visiting hour or that was a bad visiting hour and I’ll say what do you mean bad, P….? Well dad, mum was tired and there wasn't much activity there, she didn’t respond”. (Family member) She is perceived by him as safe and belongs in the home now and he has moved responsibility for her care to the staff. He believes she is getting good quality of care and is settled and content there. He finds some of the things they tell him hard to believe when they say she is having a good day. “Anne will say she’s on good form today. She was singing this morning. It’s always there, it’s just. No, I’ll leave that to the experts in the field. Aye, I’ll leave that to the experts”. (Family member) “A different bond”: feeling connected Mrs Walker engenders affection and attention from the staff. Her husband appreciates the way they attend to her.
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“I like her……I think it is because she’s a lady…….You have a different bond. Her eyes will light up, you see her eyebrows lifting, her eyebrows will lift and you’ll say good morning and she’ll say morning…… I think she’s a really cheery person when I think about it”. (Staff member) This perception appears to relate to the way she behaves. She is somnolent for long periods but is also animated; her face can show pain, distress and pleasure. She can be seen laughing and smiling at staff as they attend to her. She can also appear distressed and tearful. She experiences pain frequently and is very expressive in her response, sobbing and grimacing. Staff will respond quickly when this happens and she receives her medication and comfort. Her face crumbles and she begins to cry quietly, stops and looks sad. Then begins to weep quietly, then sobbing. (Observation) “We normally give her a wee cuddle and one to one and normally we get her out the tears into smiling, aye. Aye a wee bit of one to one comforts her”. (Staff member) She is completely dependent on staff for all her needs and her husband is grateful for this but torn about how she is when he is not there “Some nights I don’t sleep very well and I waken up and say I wonder if Irma’s lying wakened”. (Family member) He is only comforted by the belief that staff care not only care for her but also that they care about her and that his sons are also content with the care and attention she receives. “The boys, what's most important to them is that their mother is comfortable and she seems quite content and that takes P……’s worries away”. (Family member) “Down and Up”: changing needs Her pain and distress is not continuous and she is often seen laughing and smiling in response to staff or when her pain is relieved by a change in position or medication is given. When she is not in pain, she is considered to be a different person and will engage with staff by single word answers and
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by singing and moving her shoulders to music. Her husband has explained to staff about her lifelong love of music and singing and they have singled this out as a way of helping her respond to them. “She’ll go woo hoo hoo ooo ooo [makes noise] she’ll do all things like that and that’s her singing, aye. And the shoulders go, just the shoulders. Aye she does, loves the music, loves it”. (Staff member) Her responses are unpredictable over the day and she can change from smiles to tears and back in a short time. Staff manage pragmatically and respond to her as she behaves at the time. Changing the approach as she responds. Her husband does not talk about her as a person who changes at all now and sees her as non responsive while her sons are more likely to view her as different on each visit. “She'll giggle and stuff like that but it's just pot luck when you get her like that, do you know what I mean, you need to. You could walk in there the now and she could do it”. (Staff member) “Going back to her younger days she was full of mannerisms, but that’s all gone now”. (Family member) “Take the pain out”: complex care needs Mrs Walker’s complex co-morbidities, including having had a severe stroke, seizures and the recurrent pain and rigidity she experiences could be seen as a challenge to the staff. However this appears to be something they have adapted to over her time in the home. She is considered a fragile and ill woman who needs particular care provided. Her pain is key to the way she is perceived and cared for by them. “She cries quite a bit if she’s sore and things like that. I would say you probably see I….. maybe crying about twice, three times a day”. (Staff member) While she is not perceived by staff to be reaching the end of her life they do realise that her condition is worsening and that their care is key to her experience of daily life. “She'll say “ouch” when you move her and stuff like that and I just think her, her wee muscles are restricted now and she's that far gone you'll never ever get that back to easing it off. Doesn't matter what medicine you get I don't think you'll ever ease that off again”. (Staff member) 180
Her husband believes she is dying but despite the frequency of her tears and her fragile state her husband rarely sees her cry and does not attribute her tears to pain if he sees her cry. “She burst out crying but I think it was that day there was something on TV that she was quite interested in and they brought her into the room”. (Family member) Staff try hard to manage her care and keep her pain free where possible. She is perceived as a person who would not complain unless she is distressed and they will do all they can to keep her in a happy state. “She’s a contented person. She’s no, she’s no the type of person that, she’s never been a moany person or anything like that, do you know what I mean”. (Staff member) 5.6.6 Mrs Walker’s Summary Mrs Walker has a devoted husband and family but their views of her condition are nuanced. Her husband expresses grief and sadness at her condition and cannot find any hope, yet he feels that she still knows them all in some way. This is overtaken however by his belief that she is severely brain damaged and is a vegetable now. He hears his son telling him that he needs to lower his expectation about her and accept what is happening now but he finds that he cannot. He is a faithful visitor but leaves decision to his sons and the staff. He has no wish to hear any more. Staff and sons seem to appreciate this and most people say only positive things about his wife. Staff feel they have a different connection with Mrs Walker and there is warm affection expressed about her. She is perceived to be a lady and can connect and engage with them through music. Her ability to express choice and respond to them is essential to the relationship they have. They show sympathy and affection as they try to reassure and comfort her when she is distressed. Her uncertain moods and responses do not concern staff and they respond to her as she changes from smiles to tears. Her very obvious pain and distress engenders sympathy and patience and they take great care with her.
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5.7 Case study five: Mrs Musician Figure 31: Mrs Musician’s participant characteristics. Case
Gender Age of
study of the PWSD 5
F
FAST
Length
Relationship
Staff
Staff
the
scale
of stay
of family
Grade
time
PWSD
score
(years)
member
and
caring
gender
(years)
Senior
3
86
7c
3
Daughter
nurse (F)
5.7.1 Biography Mrs Musician lost her mum at a very early age but had two younger sisters. She and her sisters lived in a children’s home for some time and were separated from their father and each other. Later she married and had two daughters, then at the age of 45 trained as a primary school teacher. She retired at 61, as she felt she was not doing as well at work as before. She and her husband always loved walking and travelled widely. However her own interests were more artistic, she painted and sang in the choir. She was a church elder and a fluent and humorous public speaker. Her daughter traces the early symptoms of dementia back over 17 years but it took many years to be given the diagnosis of Alzheimer’s disease, as her mum was not keen to visit the doctor. Mrs Musician gradually needed more and more support from her husband and family, leading to the involvement of statutory services. Eventually she needed all daily activity supported and did not welcome this. She became distressed and could be angry and resist care. At that time she was prescribed antipsychotic medication to calm her responses and her daughter believes that this affected her ability to communicate. This period culminated in a fall when she fractured her femur and she was transferred directly from hospital to the home. Shortly afterwards her
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husband became ill and also developed dementia leading to his own move to the same home where he died shortly afterwards. The nurse considers that her condition has deteriorated more dramatically recently and this culminated in a severe stroke three months previously. Following this she was expected to die fairly soon, most of her medication was stopped and she was started on morphine. To everyone’s surprise she rallied and although now spending most of her time in bed she eats and drinks well and is able to respond. Currently she receives various pain medication, aspirin and vitamin injections for pernicious anaemia. 5.7.2 Quality of Life Mrs Musician’s perspective I begin to explore Mrs Musician’s perspective here by showing a pie chart derived from a 24-hour record completed by the staff member of how she spends her day (see figure 5.4). I then explain my findings from the periods of observation including her movement chart and concurrent field notes (see figure 5.5). Finally I provide a brief overview of the routinely gathered data and rating scales. Daily Activity Mrs Musician spends most of her day in bed where her door is left open and people move in and out of the rooms to provide care or speak to her. She has music playing continuously on her radio near her bed. She often has her meals there too. Staff regularly assess her need for rest and make a decision whether or not she is able to get up to sit with the other residents. This varies from day to day with the activity chart below showing a day when she is able to leave her room. This is normally every second day with alternate days in bed (see figure 2.28).
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Figure 32: Daily activity: number of hours spent in each activity
Eating and drinking 3
Listening to music 1
Watching residents and staff 1 Intimate care 3
In bedroom resting or sleeping 16
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Figure 33: Example observation period: movement record and field notes. Participant Date /time Setting Response EYES Open Closed TRUNK Relaxed Restless Jerking/twitching
Mrs Musician 19/06/14 From 4.30 – 4.35pm Bedroom 1m 2m 3m 4m 5m Field Notes Time 1 Soft music from Smooth radio in the x x x x x room. She is making movements with her mouth but no sound. Looking up at the ceiling, then lifting her head to look down at the foot of x x x x x the bed. Plucking at her nightdress. Right leg moving up and down in the bed.
Tense UPPER LIMBS
x
Relaxed Plucking
x
x
x
x
Twisting
Time 3 Still mouthing with no sound. Continues to move her leg and pluck at her gown.
Striking Tense LOWER LIMBS Relaxed Restless
x
x
x
x
x
Kicking Twisting Tense HEAD Upright Tilted forward
Time 2 Her eyes are moving continually around the room although restricted by her head resting on the pillow.
x
Tilted back
x x
x
x
x
x
x
EXPRESSION
Time 4 Outside the room a carer shouts a resident’s name to catch his attention. She does not change position or respond. Time 5 Music has stopped and a presenter is now speaking. She has stopped mouthing movements but her arm and head are making small controlled movements up and down.
Smiling Frowning Grimacing None
x
x
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The observation chart example (5.29) shows that Mrs Musician is restricted in bed, although she is propped up on pillows, but she does manage to make small movements with her arms, legs, head, eyes and mouth. Her most frequent movement is that of her right hand moving across her chest and making a plucking movement at the front of her nightdress. She moves her right leg often bending her knee. She mainly looks at the ceiling but at times lifts her head and looks around. Her mouth moves frequently and usually when the music is playing on the radio, rather than when the presenters speak. Occasionally she says a couple of words, sings or hums. She does not react to sounds outside the room at all. When staff speak to her she looks at the person. When she is given her meal she accepts it readily and licks her lips in response. When she is in the sitting room there is no music and she does not make the mouthing movements. She responds to staff when they speak directly to her and will give occasional one-word responses. Does not watch other residents or look at the environment. Routinely collected data and rating scales Mrs Musician’s care notes contain information collected when she came to live in the home three and a half years ago and include her personal details, likes and dislikes. The remainder is information about the previous few months with the information from the period between being kept in the nursing station filing cabinet. Her notes are based on her activities of living and are a guide for staff. Rating scales completed with the senior nurse are the Abbey pain scale indicating that she experiences mild chronic pain and scores 7/18. The Barthel Index places her at the extreme end of dependency with a rating of 0 /100. The NPI NH has 10 domains of neuropsychiatric symptoms and she has a zero score in most of the domains except D Depression/ dysphoria, where she is described as occasionally tearful and L Appetite and eating changes where she is now eating smaller portions and is more reluctant. The nurse is unsure if these changes are related to pain and frailty rather than mental health changes.
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5.7.3 Quality of life: Daughter’s perspective Mrs Musician’s daughter visits twice a week and shares Welfare Power of Attorney with her husband. She has been involved in direct care for both her mother and father for a number of years and feels that it has been a long and difficult journey. She has a sister who lives in Highland Scotland and is less involved in her mother’s care The move to this care home was essential as her mother had fractured her hip and care at home was not possible. She has found the whole journey difficult and this period is no easier than before. I just find that really awful going in to her being like that and she’s well cared for, she’s not in pain, you know, she’s fed and the great thing is mum, why she’s still here, she eats and drinks really well but I was finding it hard and then we had a really bright few … and then we went back to that you know Now that her mum is in the care home and her father has died she makes most of the care decisions with the support of her husband. Her mother’s recent stroke and poor health has made life difficult as she expected her to die and cannot believe that she has recovered to this extent. However her mother is very fragile now and her physical health can change dramatically and unexpectedly. This makes her life difficult to plan. I found that really hard though because I mean she lay, you would say dying, for 3 or 4 days, there was nothing, she wasn’t eating, she wasn’t drinking. She became, when they took her off the, when they withdrew the … she became very agitated and unhappy … Despite this distressing period she still feels that her mum is aware of her at times and that she notes periods when there is more connection than usual So there’s just the odd, I call it a breakthrough moment
5.7.4 Quality of life: Staff perspective The staff member has been caring for Mrs Musician for over three years and also cared for her husband when he lived in the home. She is very fond of Mrs Musician and over the years has developed a close bond. Aye, it’s like a family member.
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She believes that Mrs Musician reciprocates and not only responds to her but also recognises her voice. I think she knows my voice when I go in. She’ll kind of look at me. She now sees Mrs Musician as a lady who is increasingly fragile and her needs for physical care are a priority and she tries to provide her personal care as often as she can. If, I like, because she’s one of my frail I like to assist her with her meals and I go in and I talk to her and I’ll say do you like that tune Sadie and she’ll sometimes say mmm.
5.7.5 Analysis Lawton’s framework Having described the perspectives of the three participants I began analysis using the lens of Lawton’s framework to begin developing my case study findings. I returned to the raw data and sifting through each unit of data in turn I began using the codes previously developed and outlined in chapter three. I examined each item of data using these codes, for example an extract from the family member’s interview: “I knew she knew it was me because there was love in her eyes if she looked at you. There’s just a way she looks, there’s just a way she looks”. (3B). This code alludes to the dimension of 3. Psychological well-being, and the domain of B. Emotional expression. Figure 5.31 shows an example of the raw data captured from Mrs Musician’s case study and organised within Lawton’s framework. These data examples are short representative patches of data from a range of sources within the data set for this case study.. The data source abbreviations are shown below.
Data source
Abbreviation
Interview with family member
Family member
Interview with staff member
Staff member
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Non participant observation
Observation
Observation field notes
Field notes
Rating scales
Scales
Routinely gathered data (e.g. care notes)
Routine notes
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Figure 34: Sample of analysis using Lawton’s Framework
1 Behavioural competence (BC)
2 Perceived quality of life (PQOL)
3 Psychological well being (PW)
4 Objective environment (OE)
A
A
A
A
Physical health “Grey, you would say at death’s door, to being as bright as a button before I left. Can you tell me how that happens? You wouldn’t believe that was the same person we saw”. Family member
B
Activities of living and selfcare “You can see oh she’s licking her lips and smacking her lips, she likes chocolate and that’s how I know. Sometimes if she’s tired she’s reluctant to eat but you know she’s tired”. Staff member
Feeling of belonging “I think you have a wee special thing for, as their illness progresses you want to make them as comfortable as possible”. Staff member
B
Enjoyment of activity “That's why they’ve got Classic FM on you know in, in her room when she’s in her room they leave the radio on with, with music on but it’s the best station, if you like, to leave on. Smiles often at the ceiling. Its as if she sees a face of someone she has known Smiles sometimes at a visitor or a voice”’ Family member
Positive and negative affect Yesterday was and the face was and the smiling, I mean and laughing, if every, if there’s a few visitors in and they laugh she laughs with you, so so, uhuh, there are mannerisms that are still there definitely facial expressions you know”. Family member
B
Emotional expression “I knew she knew it was me because there was love in her eyes if she looked at you. There’s just a way she looks, there’s just a way she looks”. Family member
Material possessions Her clothing, pictures ornaments and some of her own paintings are available in her room (and a radio) Observation
B
Social support “A very close knit family 2 daughters, N…….whom you’re, you’re working with. She had a lot of input but her other daughter lives up in S……….and doesn’t have the same“. Staff member
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C
Use of time.
C
She makes smoothing movements with her clothing and plays with a little bow on her nightdress intermittently throughout the afternoon Observation D
Cognitive functioning
Sense of aesthetics.
C
“If she, she knew there was food on her face. We’re very aware of that. I’ll give her a wipe because she would be horrified”. Staff member
D
“I didn’t until then I thought her brain was destroyed.. just her brain is affecting her eyesight anyway.…also if there's a bit of food on her lip she takes it away. How does she know that in this advanced state of Alzheimer’s”. Family member
Spirituality “She’s always had really acute hearing and that has stayed you know and that was my point about in care homes if somebody doesn’t have verbal communication not to take them to the church service, you know is a shame if they can hear you know”. Family member
Mood
C
“Och I don’t like it when she’s upset, well not, you know, when she’s having a down day try to talk away to her”. Staff member
D
Social engagement
Interpersonal network “We were an extremely close and are an extremely close family of 4 but you know mum’s attitude was if she lost her mind we were to get on with our lives and not spend our lives looking after her”. Family member
D
On one occasion a nurse leans in and she watches her face and then the nurse takes her hand and she squeezes and has to be asked to let it go now, and she does let it go. Observation
Living accommodation She spends most of her time in bed. Her bedroom is sunny and warm. She lies in a hospital bed with wooden headboard. The walls are covered with art from her home and some of her own paintings. She has small items of her own furniture. Observation
FAST scale 7c Scales E
Social behaviour “He was in at the weekend and he was chatting away as well and we were all in. Maybe we were all taking over her head but she was reacting, she was turning to
E
Family and friends “She’s also got a cousin that comes in and she tends to react to them as well. I think because of her poor condition people don’t visit”. Staff member
E
Physical safety Care notes indicate that she needs a wheelchair and a hoist She is at risk of sores has a pressure relieving mattress. Needs two staff to move her Routine notes
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each voice”. Staff member F
Psychiatric symptoms
F
NPI NH D. depression/dysphoria scored 3 sometimes cries and this is considered mild L. Appetite and eating changes scored 6 eating less at meals Scales
Aesthetics “Make sure she’s nice and, she comes across as a lady that was always well dressed and nice and the girls always make sure she is always nice, well presented”. Staff member Her face is wiped without warning after eating and she grimaces. Observation
Care notes say she has no problem with her mood and in another section that she has evidence of low mood Routine notes G
Choice “She knows it’s coming but I don’t know if you noticed but when I’m feeding her I hold her hand. And occasionally you feel a wee bit pressure on your hand and more so at the end when she’s had enough”. Staff member
H
Privacy Her room door is open all day
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and the sound of the sitting room and corridors can be heard. Staff call in regularly to look and check she is safe. Observation
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Elaborative coding In this case study an example of the process of elaborative coding is expressed from 2b Activities of living and self-care. She shows dislike of some care activities and reacts to cold and touch especially water, so she shows negative responses when her face is washed yet shows pleasure when cream is applied to her face. 2b Enjoyment of activity. Her care notes advise that “staff should make sure she’s well groomed, she is a lady, always well dressed and always make sure she is well presented”. She is perceived to be a lady who has an aesthetic response, liked good clothes and was an artist, musician and teacher. This is reflected in how the nurse wants her to be presented. 4f Aesthetics (in her environment). Her room has a number of her paintings and she is believed to appreciate beautiful objects and pictures This data is encompassed in an elaborative code of:
An aesthetic lady
Together with related elaborative categories this was aggregated to a finding called ‘Responding to the senses: changing needs’ The elaborative categories and findings are expressed in figure 5.32, then each finding is reported in more detail. Findings Figure 35: Elaborative codes and findings Elaborative codes Do you want to prolong it? Her condition is deteriorating Don’t disturb her In her own wee world A breakthrough moment Take it as it comes We keep her nice An eager eater One of the family An aesthetic lady Music is key Leaning in for a kiss
Key findings Clouded by illness: responding to complex needs Living from moment to moment: recognising the person The best we can do: keeping connected Responding to the senses: changing needs
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Clouded by illness: responding to complex needs Mrs Musician has made an unexpected recovery from a stroke over three months ago and since then has been unwell but is no longer considered to be dying imminently. Her GP and staff had adopted an end of life pathway, stopping her usual medication and treating her with morphine for pain relief. “I mean she lay, you would say dying, for 3 or 4 days, there was nothing, she wasn’t eating, she wasn’t drinking”. (Family member) This has left family and staff unsure about how her condition will progress and her daughter is anxious about what will happen next and how her mother will respond. She is torn between wanting her mother to stay with her and not wishing her to suffer in any way. “Maybe she is slowly dying, you know, I don't, I don’t, very slowly, I don’t know what happens at the end of Alzheimer’s, you know this is new to me and you know, how, the stage mum’s at, do you want to prolong it for her”. (Family member) However all are clear that Mrs Musician’s physical health is deteriorating and she remains for most of the time in bed. Her daughter is chiefly concerned that her mother is not in pain and is comfortable and staff are trying to ensure this happens “Aye, so now she’s mostly on bed rest now. I think her condition’s deteriorated”. (Staff member) Despite their best efforts however they still have to provide physical care that has always been a difficult experience for Mrs Musician. While she is unconcerned at being dressed and undressed she has always withdrawn from being washed and this causes a startled response every time staff try to carry this out. Her face is wiped without warning after eating and she grimaces. NPO “She doesn’t like water, she doesn’t like getting wet. She never always was like that before you know but now she just doesn’t like getting disturbed”. (Staff member)
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Living from moment to moment: recognising the person Disturbing her to provide personal care creates distress and staff tend to work quickly to minimise this experience. There is a sense that she is happier when left peacefully in her bedroom. Her daughter believes that when she is alone she tends to become remote and this concerns her. “People say she’ll be happy in her own wee world. Nobody’s happy in their own wee world like that. it’s horrendous. An old, an old man in the care home last week was going about … all it is, they’re lost and they’re frightened”. (Family member) She prefers when her mother is responding to the overtures of other people and shows that she is connecting with them. She herself works hard when she is visiting to make connections with her mother, despite the deterioration in her health. “So there’s just the odd, I call it a breakthrough moment. I don’t know what you would call it. They’re few and far between now but we were so always delighted in the past when we got one”. (Family member) Staff are more pragmatic and appreciate that her poor health will result in sudden changes in her responses. She is very sleepy and tired now and they are aware that her alertness is likely to be variable. “We just take each day as it comes now… Some days she’s good and you get a wee spark…..Not always, no, Nothing, there’s nothing there, just a blank look. It’s as if she’s having an absence”. (Staff member) The best we can do: keeping connected Staff are aware that her daughter is finding this change very difficult and make sure that they make every effort to show that they are responding to her changing needs for care “I mean all the residents are like that, they’re all well looked after but particularly because she can’t tell us, we, we like to make sure she’s nice”. (Staff member) Much of the focus of her day is about eating and drinking. She appears to enjoy eating despite her frailty and both daughter and staff are keen that this continues.
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She smacks her lips as mealtimes approach when there is a smell of food in the environment. She makes smacking movements with her lips as she eats and when some food is left on her lips she licks them clean. As she becomes tired she takes food very slowly. (Observation) Her frailty and proximity to death affects staff too and there is a change in how she is viewed now. The nurse says she has become closer emotionally to her as she has become more dependant for care. “Aye, it’s like a family member. I think as their illness progress you become more fond of them. I don’t mean that I’m not fond of my residents but I think you have a wee special thing for, as their illness progresses you want to make them as comfortable as possible”. (Staff member) Responding to the senses: changing needs Mrs Musician is viewed as a ‘lady’ and this is reflected in the way she is spoken about by staff and the way she is cared for daily. Her care notes reflect this and there are references in her notes to her preferences for “stylish” clothes. Her paintings are treated with respect and referred to by staff in the interview and when they come in to her room. “She comes across as a lady that was always well dressed and nice and the girls always make sure she is always nice, well presented”. (Staff member) She was also a singer with a local choir and loved music all her life. Apart from food this subject is the most emphasised by her daughter and staff, both in what they say and in how they behave with her. Her daughter insists on a classic radio station being played and usually staff members comply. Occasionally a staff member forgets and puts on something else with different responses from her. When popular music programme is played on the radio in her room she makes mouthing movements, sometimes she hums. On one occasion she sang a phrase of a song and once she said “that’s good” When classical music is playing she does not respond in this way. When she is in the sitting room and ambient music is played she does not respond most of the time, very occasionally making mouthing sounds or humming. (Observation)
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Her daughter believes that as her condition is deteriorating and her emotional responses appear to be fading, her senses have become more important. When she can hear a voice she looks at the person. When her hand is touched she will hold the person’s hand. When the music plays she responds most of the time. Her daughter notes that she “sniffs” at a rose when prompted by her and she will lean in to her when she is very close. “But she does sometimes peck your cheek if you go down. Funnily enough not always mine but like Tom’s or my grand or my daughter, her granddaughter who she’s particularly fond of”. (Family member)
5.7.6 Mrs Musician’s Summary In the last few months there was a period of time when family and staff expected Mrs Musician to die. There is a sense from them that now this is an in between place in terms of her life and care. Her health continues to deteriorate yet she still requires the care and attention they have always provided. This care had always involved episodes where she showed distress and these continue but are exacerbated by her weakening condition. This failing physical state also contributes to the need to accept and respond to her changing consciousness and awareness. The periods when she is responsive are becoming less frequent and this can change from moment to moment. In response family and staff work to stay connected now mainly by using her activities of living such as eating and drinking. Her frailty is a factor in the nurse becoming ever closer to her and her family. The recognition that her needs are changing and that all wish her to remain content and comfortable changes the emphasis to a recognition of the senses to which she is able to respond. These include hearing, touch and taste but not vision and the focus of care is on the use of music and nutrition.
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5.8 Case study six: Mrs Cook Figure 36: Mrs Cook’s participant characteristics. Case
Gender Age of
study of the PWSD 6
F
FAST
Length
Relationship
Staff
Staff
the
scale
of stay
of family
Grade
time
PWSD
score
(years)
member
and
caring
gender
(years)
Care
2
84
7c
2
Daughter
Asst. (F)
5.8.1 Biography Mrs Cook worked most of her life in the local psychiatric hospital first in the laundry and then progressed to a job as cook. She had short breaks from work to give birth to her two daughters but remained there until retirement just before 65 years. Her husband also worked there as a nurse and they had a wide social circle of friends. Following retirement they enjoyed holidays and hobbies. Mrs Cook was an avid reader and knitter but most of all she loved shopping. She came into her own at Christmas and early preparations made this an event to remember. After her husband died she took less and less pleasure in activities and when she developed dementia she gradually stopped most of her interests. Her daughter describes her as a lady who did not suffer fools gladly but in the main was a happy and contented woman. She loved spending time with her daughters, grandchildren and great grandchildren. Living alone meant that as her dementia progressed she had caregivers from the local social work department. However before she moved to the care home she spent her day sitting in a chair between visits and required help with all her activities of living. Her daughter helped her to shower and wash and family were with her as much as possible. Finally she was not eating or drinking well and appeared depressed. Treatment with medication did not relieve this and finally she fell and then became unwell with severe abdominal pain. She was admitted to hospital where doctors told her family she was not likely to live. 199
Despite this she recovered but was unable to return home. Moving to a care home was not distressing for her and she did not seem aware of the move. Her daughter found the experience traumatic however and took time to reconcile herself to this change. The staff member has cared for Mrs Cook since her move there and is her key worker. Mrs Cook has required assistance with all her activities of living since she came in to the home and this continued with increasing need for care and reduced mobility, together with a small, steady weight loss. As Mrs Cook had been robust this did not cause too much concern. She enjoys her food and her favourite activity is singing. Mrs Cook has an unspecified dementia and she receives medication for type 2 diabetes, pernicious anaemia, gastro intestinal disorder and generalised pain. 5.8.2 Quality of Life Mrs Cook’s Perspective I begin to explore Mrs Cook’s perspective here by showing a pie chart derived from a 24-hour record completed by the staff member of how she spends her day (see figure 5.4). I then explain my findings from the periods of observation including her movement chart and concurrent field notes (see figure 5.5). Finally I provide a brief overview of the routinely gathered data and rating scales. Daily Activity Mrs Cook spends much of her day in her bedroom resting or sleeping. Apart from periods where she is supported to eat or she is receiving personal care in her room, she spends the rest of the day in the sitting room. In her activity record she is noted as spending the remainder of the day sitting in her chair with one hour focussed on music being played in the room and an hour with her family visitor (see figure 5.34).
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Figure 37: Daily activity: number of hours spent in each activity
Sitting in chair 2.5
Listening to music 1
Family visit 1
In bedroom resting or sleeping 13
Eating and drinking 3.5 Intimate care 3
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Figure 38: Example observation period: movement record and field notes Participant Date /time Setting Response EYES Open Closed TRUNK Relaxed Restless
Mrs Cook 06/11/14 From 5.50 – 5.55pm Sitting room 1m 2m 3m 4m 5m Field Notes Time 1 Mrs Cook is sitting in her armchair x x x x x with a bowl of chicken nuggets, which she holds with one hand in her lap. She is eating steadily from this, lifting a piece at a time to her x x x x x mouth and looking at the bowl
Jerking/ twitching Tense UPPER LIMBS Relaxed
x
x
x
x
x
Plucking Twisting Striking Tense LOWER LIMBS Relaxed
x
x
x
x
x
Restless Kicking Tense HEAD
x
x x
Tilted forward
x
x
Tilted back EXPRESSION Smiling Frowning
Time 5 Continues to offer her a drink while saying that she has food to eat. Mrs Cook continues to lift the food to her mouth and does not look at the nurse
x
Grimacing None
Time 3 A nurse takes over and points out the food in the bowl to her, although she seems to be managing this well. Tells her “here is a drink” as she raises it to her mouth. She keeps her mouth closed. Time 4 Nurse says ”here is a drink” and waits a moment and this time she opens her mouth to take a drink from her
Twisting
Upright
Time 2 A carer asks if she wants tomato sauce on these and she nods to her. Carer lifts a cup of juice to her mouth without warning she Mrs Cook tries to speak to her at the same time
x
x
x
x
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The observation example (figure 3.35) shows Mrs Cook has some movement of her arms and legs but tends to sit relatively motionless, unless staff are moving her when she will stand with support and help. Her face is inert most of the time but she can be expressive and can smile and grimace. She will raise her eyebrows and mutter words. She can use single words and these are generally socially appropriate. At other times she mutters continually, usually while looking down at the floor. At these times she can be seen pointing and changing her facial expressions. Most of her day is spent in the sitting room and she moves from an armchair to a dining room chair for meals. She rarely responds to noise around her or to other residents. If staff use her name she will look at them but does not make eye contact. She can eat food and drink from a cup if these are placed in her hand. If the food or drink is on the table she will make no attempt to reach for this. If the plate or cup is held in her lap she will eat food or drink from this regularly without prompting. She rarely looks around her, looking at the floor where all reports suggest she is seeing a person, child or animal. She is not distressed when moved, even when she is muttering. Routinely collected data and rating scales Mrs Cook’s care notes consist of general information about her when she came to the home. The remainder is information about the previous few months with the information from the period between being kept in the nursing station filing cabinet. Her notes are based on her activities of living and are a guide for staff. Her reports tend to reflect the care plan almost word for word. Rating scales completed with the senior nurse are the Abbey pain scale indicating that Mrs Cook has no pain and score 1/18. The Barthel Index places him at the extreme end of dependency with a rating of 10 /100. The NPI NH has 10 domains of neuropsychiatric symptoms and she has a zero score in most of the domains except A Delusions where she is perceived to interact with her husband, who is deceased. B Hallucinations where she is considered to be looking at something that is not there and G Apathy/indifference where she is believed to have lost interest in the world
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around her. While all of these occur frequently she is not perceived as distressed by any aspect of these experiences. 5.8.3 Quality of life: Daughter’s perspective Mrs Cooks has two daughters who share power of attorney and both visit regularly. However this daughter N…..lived at home for many years and was the most involved in her care at home. Both daughters agreed that N….. should speak to me. Mrs Cook lived at home alone for a number of years and that continued even when she was no longer able to walk around without help. She required full assistance with all her care needs and only moved to the home after a fall and serious illness. She was in hospital for a period and on discharge all involved appreciated that she could not return to her own home. While she was still at home her daughter thought her mother was depressed and lonely despite family visits. She has found it difficult to come to terms with her mother moving into a care setting and only the efforts of staff to reassure her about her mother’s care have allowed her to come to terms with the arrangement. No its funny but I don’t feel I need to do that, I know she gets adequate diet in the home…… when in hospital ….felt the need then because I wasn’t sure,,, and I didn’t trust maybe that’s wrong to say, but is didn’t trust to know she was getting enough She visits weekly and spends time with her in her bedroom where she sets her hair and cleans her nails. Her mother likes co-ordinated clothing and she sets this out for her for the week ahead. Clothes are all laid out in matching colours for her by her daughter who also changes her bedcovers and washes these. When she visits she tries to engage her mum in conversation with minimal result and she finds this very difficult. She is comforted a little by her mother responding when she cuddles her but wonders if she would do that anyway and perhaps does not realise it is her daughter. her head’s always down but if you go over she does lift her head up and when you give her a cuddle and you say silly things to her she, she reacts
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Communication with her is a continued challenge and her daughter finds that her lack of eye contact, which she appreciates might be caused by her mum’s poor vision, makes her feel that she is not connected with her mum I think she can’t see me if she doesn’t look at me, but maybe that’s the wrong thing. I suppose sometimes when she sits, I’ll say things like to her like “are you in” and she’ll go “aye, I’m in”. Now she has said that to me, “aye I’m in”. Communication with staff in the home helps her cope with this, as they tend to reassure her about her mother’s well-being and care as well as her own importance to her mother. I’ve asked A. that, I’ve said if you and I’m sure that a lot of people do that to her give her a cuddle, the girls that care for her, I said to A does she do that with you. She said no, it’s just you but me being me thought she was making me feel better by saying that.
5.8.4 Quality of life: Staff perspective The staff member has cared for Mrs Cook since she moved into the home and speaks about her with some affection. She believes that although Mrs Cook needs most of her daily activities fully supported by staff this is something that she accepts. Aye, aye, she’s quite good to look after B…..she doesn’t, she doesn’t really complain about anything. However her lack of activity and engagement with others did trouble her and she expressed concern that life in the home was a series of care episodes and mealtimes all she’s doing is getting up, going for breakfast, you know going to the table, back to the table, going to the toilet, back to table. That's her full day 7 days a week. Despite this lack of activity singing and music are singled out as important to Mrs Cook and staff will try and engage her in any musical entertainment available She likes singing. If we start a wee sing song off then sometimes she’ll join in.
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Generally her personality is still seen as important and there is some sense that she continues to reflect her previous life and behaviour in her present responses I think she's got quite a good personality. I think she would be quite fun to be around … quite happy with music and singing away and stuff like that. I think she's happy enough. She seems to accept the reported hallucinations Mrs Cook experiences and this appears to have become part of her usual behaviour. She’ll look down and it’s like she's talking to something on the floor or something at the side of her, as if she's talking to something round about there 5.8.5 Analysis Lawton’s framework Having described the perspectives of the three participants I began analysis using the lens of Lawton’s framework to begin developing my case study findings. I returned to the raw data and sifting through each unit of data in turn I began using the codes previously developed and outlined in chapter three. I examined each item of data using these codes, for example an extract from the staff member’s interview: “Sometimes I say B…… do you want to wear this today and if she says aye, sometimes she doesn’t then we decide what she wears”. (4G). This code alludes to the dimension of 4. Objective environment and the domain of G. Choice. Figure 5.37 shows an example of the raw data captured from Mrs Musician’s case study and organised within Lawton’s framework. These data examples are short representative patches of data from a range of sources within the data set for this case study. The data source abbreviations are shown below. Data source
Abbreviation
Interview with family member
Family member
Interview with staff member
Staff member
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Non participant observation
Observation
Observation field notes
Field notes
Rating scales
Scales
Routinely gathered data (e.g. care notes)
Routine notes
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Figure 39: Sample of analysis using Lawton’s Framework 1 Behavioural competence (BC)
2 Perceived quality of life (PQOL)
3 Psychological well being (PW)
4 Objective environment (OE)
A
A
A
A
Physical health
Feeling of belonging
“She had severe stomach problems a couple of years ago”. Family member
Care reviews with family and social work say she is contented and all agree Routine notes
Optician records she has cataract and her vision is poor Her hearing is recorded as good No recent weight loss Routine notes
“She does appear relaxed and it doesn’t really bother her”. Family member
Positive and negative affect She shows no positive response to staff or residents. Seen to grimace at times. Observation
Material possessions “Oh in her room you mean like with all her pictures and stuff like that. Just the pictures and some of her ornaments and that but other than that she’s not really got anything”. Staff member
Abbey Pain Scale 1/18 Scales B
Activities of living and selfcare “Well I do personal care and we do like making sure she gets her drinks and her teas and her breakfast, lunch and dinners, all that kind of stuff cause B…..’s not able to lift her food up herself”. Staff member
B
Enjoyment of activity “She’ll just, if it’s singing, she’ll join in if it’s singing. She likes to sing aye and sometimes her feet will go, if it’s music you see her wee foot going”. Staff member
B
Emotional expression “But when I go in I always crouch down give her a kiss and a cuddle and she tucks her head in and she will smile so there is recognition of me there”. Family member
B
Social support “I think I……. and the granddaughter come in every Thursday. They come every Thursday and I don’t know when N…….. comes in, but she does, she does definitely come in”. Staff member
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C
Use of time.
C
When she is sitting on her armchair she spends time looking down at the floor and mutters but nothing coherent. This usually happens when the room is quiet and there is little movement. Observation D
Cognitive functioning
D
Staff member passes her and says Hi B…. (her name) she looks at her. Observation F
Psychiatric symptoms NPI NH A Delusions Staff report that she seems to talk to her husband at times
Spirituality Church of Scotland no longer attends Routine notes Enjoys going to church Routine notes
FAST score 7c Scales Social behaviour
C
Nurse takes Mrs Cook’s apron of and moves away whereupon she pulls her skirt straight and brushes it down. She sniffs and wipes her nose. Tries to button up her cardigan, smoothes her skirt Observation
Diagnosis of dementia Daughters have Power of Attorney Routine notes
E
Sense of aesthetics.
E
Family and friends
Mood
C
“I do believe that she’s happy in her wee world and there’s not, doesn’t seem to be any distress there so that would make it worse for her if she was distressed”. Family member
D
Social engagement
Interpersonal network “There was two or three of the girls that seemed to have a really, really good relationship with her and she seemed to respond to two or three of them in a kind of a manner as if do you know you’ve been here forever hen and I like you”. Family member
D
“Sometimes when you, you get her up and into her chair or whatever she’ll talk away, sometimes she’s very, very chatty and some of the time she’s really quiet”. Staff member
Living accommodation Her bedroom has photographs, ornaments and small tables from her home. Her daughter N changes her duvet covers and takes them home to wash each week Observation
E
She has two daughters who visit on different days each week Observation
Physical safety High risk of skin breakdown but no issues just now Risk of falls needs two staff and uses hoist Routine notes
F
Aesthetics Her daughter makes sure she has nice toiletries ‘Getting to know me’ document
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causing no harm or distress B Hallucinations staff report she seems to see and talk to ‘things’ that are not there. This occurs often but are harmless and do not cause distress G Apathy/Indifference she has no interest in what is going on around her often. While she is not distressed she only engaged by strong events such as family visits Scales
says she likes her clothes colour co ordinated Routine notes
G
Choice “Sometimes I say B…… do you want to wear this today and if she says aye, sometimes she doesn’t then we decide what she wears”. Staff member
H
Privacy “I always take my Mum to her room, cause I just like the privacy of the room and if my mum’s not responding so well I can sit quietly”. Family member
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Elaborative coding In this case study an example of the process of elaborative coding is expressed from 1b Activities of living and self-care, her daughter is happy with her physical care and trusts the staff. Staff find her a good person to care for as she lets them provide personal care without any problem. She allows the staff to carry out care without distress. 1e social behaviour. When a staff member passes and says her name she looks up at her. She puts her arms up for the staff to cuddle her before she goes to sleep. 2a feeling of belonging. She looks at ease in the room and sits contentedly. Her daughter feels her mother is at home and at ease and she is comfortable visiting and leaving her there. This data is encompassed in an elaborative code of:
I trust them
Together with related elaborative categories this was aggregated to a finding called: ‘Going to mum’s house: A sense of home’. The elaborative categories and findings are expressed in figure 5.38, then each finding is reported in more detail. Findings Figure 40: Elaborative codes and findings Elaborative codes Knows her name She’ll just start singing Everything matches A wee character Speaks but doesn’t look Looking at the floor I would like her to know me She has nothing Treated like a child It could be worse Happy and content She cosies down You get a wee kiss I trust them
Key findings “Oh she is singing”: keeping the person. My own wee world: need and connection Well here I am: recognising needs Going to mum’s house: A sense of home
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“Oh she is singing”: keeping the person. Mrs Cook is described by staff as a ‘happy person. She is well known in the home for her singing, she not only contributes to any singing parties or musical sessions in the care environment but also sings spontaneously, moving her foot in time with the music “If it’s singing, she’ll join in if it’s singing. She likes to sing aye and sometimes her feet will go, if it’s music you see her wee foot going”. (Staff member) Staff know something about her previous pleasures in socialising from conversations with her daughters and can link her previous enjoyment of music to her current behaviour. She was described as a person who had a good social life and the staff see something of that sociable and happy person now “Then she’ll start singing and everybody goes quiet and then when she stops we’ll go oh B……” [clapping hands]. (Staff member) Her daughter also sees echoes of her mother’s previous actions and reactions in her behaviour. She was a person who generally likes to present herself well dressed and with matching clothes. Her daughter strives to maintain this and sees her mother still brushing and smoothing her clothes with her hands. She will try to button up her cardigan and roll back her cuffs as she always did “Her cardigan most of the time is buttoned because if it wasn’t buttoned, she would button it herself”. (Family member) My own wee world: need and connection Mrs Cook mutters and talks most of the time, some of the words are recognisable and at times appropriate to the comment made to her. Staff describe her often as ‘chatty’. There are rare episodes where she can follow a simple conversation “Put her into bed, out the blue she says I’m starving. I says you’re starving? She says aye hen and I says to her could you go a wee fish supper and she says no. I says a sausage supper, she went aye like that”. (Staff member)
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However she is not responsive for most of her day to speech or attention and she will rarely maintain eye contact with anyone. She is described as staring rather than looking at others. She spends most of the day looking at the floor and she gesticulates, nodes and speaks in a continuous muttering sound. Family and staff believe she is hallucinating. When she is sitting on her armchair she spends time looking down at the floor and mutters but nothing coherent. This usually happens when the room is quiet and there is little movement. (Observation) This responsiveness and animation is rarely observed in any of her interactions with other people. She occasionally looks at the person next to her and says a few words and will look at the person who uses her name briefly. However staff can assist her to eat and family can sit and talk to her and she does not look at their face at all. “I believe that she responds to B.. When I call her mum she doesn’t respond so well sometimes but see if I call her B. which is quite alien for me to say, call your mother her name, but then we used to when we were carrying on with her, but if you say B……. she does”. (Family member) Her daughter finds this lack of eye contact and response distressing in the extreme and very difficult to come to terms with. However despite this lack of visual contact her mum will respond physically to her. Both her daughter and the staff express doubt that Mrs Cook recognises any of her family or staff members. “I would like her to think N……. is sitting next to me, do you know, but honestly I really don’t know what goes on in somebody’s head”. (Family member) Well here I am: recognising needs Staff recognise that Mrs Cook spends long periods with little activity apart from eating, drinking or intimate care. Her lack of response to others prevents their involving her in any activity other than singing and church services. While this troubles staff they see little alternative.
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“Obviously there’s not much going on in it apart from getting up, having her breakfast, going to the toilet, back to the table for lunch, dinner, so that’s kinda all she does all day”. (Staff member) Her daily round of eating and washing is considered to be one that causes her no distress and any negative response is generally mild and staff believe they can reassure and encourage her to join them in care. Her daughter wonders if she is simply accepting the care but does believe her mother feels as though she is treated as a child. “Maybe it was something to do with, how do you know with someone with dementia is it because they feel as if they are being treated like a child. Is it that ‘oh my goodness, somebody has to do that for me”. (Family member) This lack of general distress in her care episodes is seen positively by all and perceived as a sign that her needs are being met as far as possible. “That’s what I’m saying, you don’t hear her getting dead angry about anything or upset”. (Staff member) She also has pleasures that have been lifelong and are still seen by her daughter as reflected in her behaviour and have value to her. “She smacks her lips. So it shows that the pleasure that ruled her life, pleasure of food”. (Family member) Going to mum’s house: A sense of home Family and staff believe she is happy and content. Her daughter contrasts this with the period her mum spent at home with care staff calling in four times a day and she considered her mum became depressed. Life here is seen as a positive alternative. “Sometimes she appears to be happy. She’ll maybe sit and she’ll have a wee blether. It’ll maybe not make any sense to us but she’ll blether”. (Staff member) Staff use comfort based language about her response to daily care and perceive her as comfortable and content for most of the time.
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“When you put her into bed she’ll thingummy the cover up a wee bit like that. She just cosies down and then that's her for the night”. (Staff member) Staff speak affectionately about Mrs Cook and will try and gain a response from her by touch and behaviour. They believe she is at ease in the home and with all members of staff who care for her. They see no difference in her response to each person caring for her. “If you put her into bed you say oh good night B…….and you give her a wee kiss and she’ll say right, she just says right hen, that’s it”. (Staff member) Her daughter when she visits, spend time with her mother in her room and she organises all her mum’s possessions for staff. The staff check her concerns around her mum’s diet and make effort to ensure this is maintained and recorded. As a result she says she trusts them with her mother’s care and sees this as a real achievement for her as she is so emotional about her mum being cared for away from her own home. “I feel comfortable with them, when I go in there I feel as if going to my mum’s house almost and that’s a big thing for me”. (Family member)
5.8.6 Mrs Cook’s Summary Mrs Cook is viewed as happy and content in the home. She accepts all care with minimal resistance and any reluctance shown on her part is considered easily managed. She spends most of the day muttering, nodding and gesticulating as she looks at the floor and this is recorded and generally accepted by family and staff who do not interfere with this behaviour. Her lack of response to other people does cause her daughter some distress and she works hard to try and engage her mum. She is somewhat comforted that her mum leans in when she cuddles her but feels that she may not know her now. Mrs Cook continues to sing and can say some words, occasionally joining a brief exchange of words with staff but cannot sustain this. Her care appears rather distant, for example, she makes no eye contact with staff when they 215
help her eat and drink. She does have very poor vision but neither her daughter nor staff perceive this to be the cause, instead they feel she may not be able to respond to them, perhaps because her dementia is so advanced. Despite this staff continue to talk to her and try and involve her in any musical activity in particular.
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5.9 Cross Case Analysis Having reported in depth on each of the six case studies I synthesised these case descriptions within a cross case analysis, described in chapter four. Using a matrix as a guide to assist in the development of themes, this was further interrogated by returning to the raw data sets and analytic notes. Having developed an understanding of the individual cases I continued to move between the raw data, case descriptions and across cases to develop the themes from the six case studies. The themes are presented in the cross case matrix with the key findings from the individual cases (Figure 5.39). I then developed four assertions by following Stake’s approach of finding commonalities by examining the particular from the findings of these six cases and the general themes from the cross case analysis (Stake, 2006). These are synthesised to express an understanding of quality of life for the person with severe dementia.
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Figure 41: Cross case analysis of findings and themes Cross case themes 1. Expressing and discerning needs
Mrs Flower Findings “You have to think she is ok”: understanding needs
Mrs Gardener Mr Artist Findings Findings “Trying to tell you”: recognising need
Mrs Walker Findings “Down and up”: changing needs
2. Complex care needs in severe dementia
Do not disturb: “Holding on like experiencing grim death”: the unwelcome care experience of unwelcome care
“Take the pain out”: Clouded by complex care illness: needs. responding to complex needs
3. A sense of “I’m still here connection and you know”: engagement making connections 4. Interpersonal The same as relations in the before: life of the person knowing the with severe person dementia 5. Illusions of home in severe dementia.
“On standby”: connections are made
A different bond: Feeling connected
The best we can do: keeping connected
My own wee world: need and connection
What do you expect?: recognising the person
Living from moment to moment: the changing person
“Oh she is singing”: keeping the person.
“Echoes of the past”: seeing the person
He has his moments: connecting with his world “He can still do things”: maintaining the person “A familiar surround”: a kind of contentment
Mrs Musician Findings Responding to the senses: changing needs
Mrs Cook Findings Well here I am: recognising needs
Going to mum’s house: A sense of home
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5.10 Overview of Themes. Five themes have been developed from the individual case study findings and the cross case analysis data (See figure 5.40). These themes illustrate contributing dimensions of quality of life in the person with severe dementia (FAST 7) living in a care home. An overview of these five themes is presented followed by a more detailed exploration and analysis of each. Figure 42: Quality of life in severe dementia
3. A sense of connection and engagement 2. Complex care needs in severe dementia
4. Interpersonal relations
Quality of Life 1. Expressing and discerning needs
for the person with severe dementia (FAST stage 7) living in a care home
5. The illusion of home
5.10.1 Quality of Life and the Person with Severe Dementia. Theme one identifies how needs and preferences are expressed and discerned in this period of the person’s condition. The person’s current needs may change from moment to moment giving a transient aspect to their quality of life. Theme two provides a deeper understanding of the complexity of needs in the context of frailty, vulnerability, pain and co-morbidity. This complexity of care needs can lead to care that can be welcome or unwelcome. While unwelcome care is more obviously recognised by others, it is not always successfully managed, affecting quality of life. In seeking an understanding how needs might be discerned, communication and
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engagement underpins theme three where the efforts of all participants are discussed, the person with dementia, family and staff. Some of these were subtle and intricate to discern, others were inexpert and some intuitive; variations that influenced quality of life. Theme four explored the diversity in interpersonal relations among the participants and others. There is a sense among family members that the person is faded or muted and relations are maintained through a combination of knowledge of the past and finding the best in the present situation. Staff expectations are threaded through the role they have of practitioner and caregiver. The common aim of all participants is to achieve contentment for the person with dementia, which was linked to quality of life. Despite the use of artefacts and the environment to create a homely environment this theme was about the ‘illusion’ of home. Reflecting how some participants used the word home, talking instead about “the care home” or “the home”. However there is also a sense of the familiar, of knowing this place and people and being comfortable here, supported by some use of familiar objects. This is more about feeling ‘at home’ rather than ‘being home’, an illusion of home, which might modify quality of life.
5.11 Analysis of Individual Themes 5.11.1 Theme one: Expressing and Discerning Needs This includes a discussion of the expression and discernment of needs influenced by the changing and unpredictable needs of the person with severe dementia (FAST 7). Efforts are made by family and staff to understand choices and the subtle expression of needs by the person. The significant and changing needs of the individual with dementia at different times in the course of the condition echoes the person’s history, habits and current situation (Cohen-Mansfield, 2013). The expression and recognition of needs are a key aspect of quality of life for the person with severe dementia but there were differences not only in the way participants with dementia expressed these, but also how family and staff discerned and understood them. Most family and staff said they would ‘know’ the person’s needs and preferences and asserted that despite the lack of verbal ability, the
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person was able to express needs, preferences and choices. During observation periods most of the participants were seen to react to sound, touch, visual stimulation, taste, discomfort and pain. The content of the care notes identified a variety of choices and preferences garnered from the person’s history, family reports and staff observations. Recorded in the plan of care was a range of needs based on a model of activities of living, together with instructions how staff should meet these needs. Rating scales gathered routinely and specifically for this study, showed a range of needs for physical and psychological care. Despite the static care notes and care plans revised monthly, the person’s needs were for most part changeable and not always predictable. Family and staff had different sources of knowledge and did not always discern needs in the same way. Observed behaviour, reactions and responses were sometimes obvious and unmistakable such as Mrs Walker’s sobs and sometimes consisted of long periods of somnolence with virtually no movement as seen with Mr Artist. Some reactions were understandable, Mrs Flower looked up intently when the noisy hoists were rolled in front of her, others were not, Mrs Cook continued to react and respond to something on the floor in front of her, even when moved from room to room. Rating scales recorded by staff often did not correlate with observations or interview material as in Mrs Flower’s apparent pain when being dressed that did not result in her receiving medication to reduce her discomfort. Where expressions, responses and reactions were low key, subtle and difficult to identify in the person with dementia, these challenged family and staff alike. Mr Walker found his wife’s responses were the same each time he visited and he considered he was not able to discern what she needed. While Mrs Flower’s daughter also found her mother’s reactions changed little, she was always clear about knowing her needs. Whereas the staff member’s response to Mrs Flower’s unchanging facial expression was to do what she believed was needed and hope that this would be the correct action. This disparate reaction was more obvious where staff did not react to the brief grimaces of Mrs Cook; yet Mrs Walker’s tears and sobs prompted a clear and rapid response to an expressed need. This resonates with the concept of the
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‘meaningless no’ and ‘meaningless yes’ coined by Jacques (1997).
He
identified that when behaviours were distinct and recognisable to the caregiver, a response was given. This can be seen for example when medication is offered and the person simply accepts this but there is no meaningful consent. This lack of meaningful acceptance is not questioned. Conversely when the person actively closes the mouth and refuses to accept this then it is considered to be a refusal, generating a response from caregivers. In endeavouring to try and understand expressed needs most family members positioned the person’s response and reactions within their knowledge of past behaviours and attributes. Staff tended to view the person from the time they had begun to care for them. Mrs Flower’s rare but heartfelt sobbing was positioned by her daughter as a mother’s reaction to her sadness and she struggled to accept that some staff believed this was simply part of a deteriorating condition. Mrs Flower’s staff member was torn about this behaviour as she had witnessed her cry while looking at a religious event on the television and she believed that Mrs Flower’s tears were caused by a response to a given situation and therefore not caused by dementia. Hughes (2013) believes that there is always the potential to feel what the person means even where language is lost. Staff depended either on previous knowledge about the person, professional experience or information from family or other staff. Generally with limited knowledge of the person before they moved to the care home, information was garnered from admission information in the care notes and informal discussion with visiting family members. Of the six people involved only Mrs Gardener had a life storybook, developed by her family; Mrs Musician had detailed information in her care notes provided by her daughter. The person’s likes and dislikes were recorded on admission but changed rarely in the care notes over the years. Staff and family in interviews reflected some change in preferences, such as when Mrs Cook with her lifelong aversion to chicken was found happily eating this. The family and staff members appeared to function with minimal interaction and they had few opportunities to work together to address needs and preferences. Family
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visits were normally twice or three times a week and staff worked long shifts over three days a week, making meeting with relatives difficult and erratic. Staff members clearly listened to the family directions and try and conform to these but did not necessarily agree with these. For example, Mrs Gardener was seated facing out of the window at the behest of her family to watch the weather and life outside while staff felt that she would be better in the group and involved with others in the home. Mrs Musician’s radio station was set to classical music yet observation showed that she responded to more modern music when staff used a different station. While all endeavoured to do their best to respond to the person’s needs, this could be confounded by the challenge of discerning these, agreeing how to respond and being consistent. The person with severe dementia was perceived to be able to make some choices about needs. These choices were expressed by both positive and negative responses. Mrs Musician would smack her lips when offered food she enjoyed and Mrs Gardener clearly said ‘no’ when offered a book to look at. Despite this there were few options available in most aspects of life and the main choices were in food and drink. Some people had definite preferences Mrs Flower liked meringues, Mrs Gardener and Mrs Musician sweet food. Some people less so, Mrs Cook and Mr Artist were seen to enjoy a variety of foods with no food being refused. All of the group were considered to be able to refuse certain food and drink and this was not only related to likes and dislikes but simply to how the person felt at that time. Responses ranged from the simple word ‘no’ to spitting food out of the mouth. Family members identified that the person showed enjoyment of specific food and during observation periods there was continuous variation in the responses to food and drink. Clare et al (2014) suggested using enjoyment of food as a measure of well-being at this stage of dementia might be of limited value given the challenges of lack of appetite and the need for help with food and drink. All participants were understood to be able to identify needs and choice in food and drink, and in particular, show dislike or distaste.
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5.11.2 Theme Two: Complex Care Needs in Severe Dementia Theme two reflects the impact of complex co-morbidity and how both acute illness and long term conditions affected quality of life. Despite changing and multiple needs the process of adaption was perceived. The frailty, co morbidity and severe cognitive impairment of this group produced a complex matrix of reactions and responses from all participants. The mean age of the person with dementia was 85 years, the FAST scale scores ranged between 7a and 7d and the average length of stay was 2.5 years. All participants in this group had a range of health issues including sensory deficits, cardiovascular, musculoskeletal, endocrine and neurological conditions. All received at least six medications regularly not only for physical health problems but some also for depression and dementia. All of these would be expected to have an impact on daily life but despite this, all continued to respond to others and while only some could smile and react in an obvious way, the remainder appeared to be content and showed no signs of distress for long periods of the day. All were able to eat and drink, maintained a steady weight and slept well both throughout the night and during daytime naps. Lawton (1997) within the quality of life framework used to inform this study clearly identified a key aspect of continuing to maintain quality of life included the ability to adapt in a changing context. The complex and changing needs found in this group were part of a long continuum and a slow process of change. Physical frailty was not found to be associated with quality of life in a care home population of 590 participants, suggesting that even with a range of complex co-morbidities there is an adjustment to the change in function over time (Fougere et al, 2015). Giebel, Sutcliffe and Challis (2015) surveyed 122 people with dementia and their carers in relating performance of activities of living and quality of life in 44 people with severe dementia. Quality of life was not negatively affected by the reduction in functional ability. Two of the group had experienced recent acute illness and subsequent deterioration in health and both were receiving opioid medication for pain. While issues such as pain and distress are considered to be common in older
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people with severe dementia it is generally expected that this might be differently experienced and addressed in this group (Scherder et al, 2008). Mrs Musician and Mrs Walker received regular and routine pain relief. Yet general pain or discomfort had to be expressed in a noticeable way to be responded to quickly. Staff identified that some processes such as washing and dressing might cause pain, and suggested that the person may need pain relief. However where the behaviour was low key and transient this did not create an immediate response. The use of rating scales for pain was not part of routinely collected data at the beginning of the study. However, rating scales for this study included the Abbey pain scale completed by the senior nurse as part of the data for each case study. Apart from Mrs Walker minimal chronic pain levels were identified for this group. Generally the nursing staff managed the complex long-term health needs of the people in the group and as these conditions were not perceived as acute these were mainly treated by medication. The data contains little about ill health apart from family, staff and care notes listing these. Mrs Gardener was one exception as she had been very acutely ill previously and had been hospitalised and had been in great pain and distress, requiring intensive care and treatment. This was referred to and contrasted with her current condition. Quality of life was compared to that period of illness.
Mrs
Musician who had recently had a stroke and Mrs Walker who experienced severe episodes of pain as her condition deteriorated also attracted a good deal of concern and there was a more intense effort made for care and comfort. Staff tried to meet these complex and changing needs and in one case the nurse became tearful in her concern for Mrs Musician. Heggestad, Nortvedt and Slettebo (2015) suggest that where staff perceive the person as having agency and where there is a relationship between them there is less likelihood of task-based care.
Fundamental
physical care was an overriding theme for staff and these assisted activities of living did occur at set times of the day. However, some staff used this time to speak and engage with the person and encourage them to make choices. Some activities such as eating and drinking retained positive aspects and others such as intimate care produced mainly negative responses. Care could
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be welcome or unwelcome by the person with dementia and created a different response from staff. While acceptance and refusal of food was perceived as an expression of choice, for some the refusal of personal care presented a more complex phenomenon. Not all the participants showed personal care to be unwelcome, Mrs Flower and Mrs Cook were perceived to accept care and make no negative response. Mrs Gardener and Mr Artist were perceived to find this care experience unwelcome and would resist this physically and consistently. Mrs Gardener and Mrs Musician were also unhappy at this care but pain and frailty was seen as the most likely reason for this. Intimate personal care such as washing and showering was the main focus of distress shown by people in the group. Hughes (2013:356) identifies this response as “remnants of her autonomy now inscribed in bodily form”[sic]. Family members, while aware of this response, appeared to accept it as inevitable, either because of previous experience of care previously or because of concerns around pain and discomfort. For Mrs Gardener it was a long-term response, she simply did not like to be washed. For Mr Artist there were gender issues expressed by staff, considering that for a man it might be particularly difficult being washed by women. For Mrs Musician and Mrs Walker it was seen as understandable given their fragile and deteriorating health. Staff tended to respond with sympathy to all situations but had no solutions other than simply getting it over with and finishing the care quickly. They justified this by explaining that the person settled down quickly as soon as the care episode was over. It is suggested that continuing to provide care that is unwelcome will increase resistance. Belzil and Vezina (2015) carried out a contextualised video recorded study and found that the pre-existing state of the person with dementia is more critical than the caregiver’s behaviour in this situation. While a collaborative response from the person may be increased by the positive response of the caregiver, a negative response cannot be changed. This fragile group of people experienced a range of challenges both in their health and in the care they received. While a process of adaptation was
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part of their experience they continued to resist where that experience was unwelcome to them at that time.
5.11.3 Theme Three: A Sense of Connection and Engagement Theme three examines the responsiveness of staff and family to the communication from the person with severe dementia. This is particularly focussed on personal care and the importance of the senses in making connections. There was considerable variance in how responses were perceived from the person with dementia as some of their faces showed obvious emotion and some did not, some spoke a few words and others were completely non verbal. Where the person was known to be able to respond verbally, contact was made using language, often the person responded with single words. When the person used an occasional phrase that seemed to respond to an opening gambit by staff, this was seized upon and efforts made to continue the conversation, as seen with Mrs Cook when she responds to staff talking about fish and chips and this is related with great relish by the staff member. Mrs Musician who was not expected to speak at all and only murmured to music, sang a repetitive musical phrase along with a singer on the radio. These verbal responses are rare and may reflect the concept of ‘lucidity’ where the person seems more aware than usual for short periods (Normann et al, 2006) However, these verbalisations were infrequent and some of the group only made sounds, like Mr Artist’s growling noises. Mrs Flower did not make any sound at all, yet staff made efforts to connect verbally. These attempts lasted only a moment and when response was not easily discerned they tended to move on or continue the physical care they were to provide. Clare et al (2014) cautions against conflating a lack of responsiveness with a negative quality of life. Lack of response is not necessarily an indicator of a negative internal life. This subtlety in discerning communication and engagement from the person with dementia created a varied and complicated set of reactions and responses. Where a need was expressed by the person appropriately in the 227
context and was acceptable to staff then this was relatively straightforward. Such as when the person was asked if they wanted a drink and they could nod or reply ‘yes’. However if any of these elements were missing then the complexity increased. At times connection was an intuitive experience and the family or staff explain that they knew how the person was feeling at that moment, such as if they were happy or unhappy. This reflects the opportunity to develop understanding using the emotions rather than cognition (Hughes, 2013). This connection for families sometimes included echoes of the past where familiar memories, beliefs and behaviours were called upon to help make sense of the current connection. This is reflected in the stance Hughes (2013) takes about making meaningful connections by engaging with the “whole surround”, rooted in feelings and shared understanding. Sometimes objects and artefacts were a means of engaging the person. This is seen in the book of flowers given to Mrs Gardener, where the staff stopped occasionally to point out a flower and say how pretty it was. Mrs Walker was known to enjoy music and the staff member made a point of playing music when she was in her room providing care with her. Almost 50% of the waking day was spent in personal care and eating and drinking and these were the most likely periods of connection and engagement. Connection could be seen in body responses where the person moves towards others or they move a part of the body in response to care being offered. Where care was welcome this experience was harmonious and some connection was experienced when Mrs Flower, Mrs Gardener, Mr Artist and Mrs Cook moved in response to the dressing process providing assistance to staff. Mrs Flower would lift her hand to hold on to the lifting aid or wheelchair and Mr Artist would lift his feet to have his shoes put on. Family members tried hard to make connections and some staff identified similar efforts. However some staff seemed to miss or dismiss efforts from the person to connect. Often the efforts of staff to communicate were ineffective simply because they did not give the person enough time before they moved on. These brief periods of interaction were also noted by Kelly (2007) who commented that interactions were too brief to have more than a
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transitory impact on well-being. During periods of observation it was seen that after the staff had looked away or became engaged in another activity the person with dementia had only just begun to look directly at them. Sustained contact by others could have an impact, when Mr Artist was eating breakfast one staff member spent considerable time maintaining eye contact and helping him to eat. The next staff member who approached made no effort to do this but he still maintained eye contact with her for some time. It may be that the time taken by the person to respond is not recognised by some family and staff. In recent reports on awareness by Clare et al (2013) a number of references are made to the connection and understanding generated by looking at the person’s eyes. While a number of participants among family and staff mentioned this few could explain how they connected and understood the person. One frustrated staff member expressed her vexation about how she had tried to write about this in a personal reflection and she decided she just knew, but could not explain how she knew. Others like Mrs Gardener’s daughter described a sparkle in her mother’s eyes when she was engaged with her. Mrs Flower’s daughter talked about her mother’s eyes being dead when she could perceive no response. Sometimes the person’s eyes held no answer. Mrs Cook never made eye contact with family or staff and looked at the floor chatting to what she saw there. She was not entirely disengaged however and when her daughter reached out to hold her she would move into her arms. Some family and staff appreciated a sensory approach as a means of engagement with touch, sound, vision and taste in particular both talked about and observed. Touch was on the person’s hand or arm to gain attention, or by stroking hair or shoulders. The person’s name was used often by staff and in Mrs Cook’s case her daughter found it strange as she had to use her first name when she no longer responded to ‘mum’. The severe visual impairment experienced by Mrs Cook and Mrs Walker reduced the ability to make contact in this way and the remainder of the group had some degree of visual impairment due to age or cataracts. Despite this Mrs Gardener had her book of flowers and Mr Artist and Mrs Flower looked
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around at movement and other people most of the day. Food and taste was a key aspect of the day for all participants and much of the social aspects of engagement occurred while food was being consumed. Mrs Gardener and Mrs Musician’s daughter used a range of sensory stimuli to make contact and often combined a range of sensory approaches. Mrs Gardener’s daughter found that even if she left the room she had to begin again to re-engage as her mother was what she called “on standby” as though she needed to be switched on to others. This phenomenon was akin to what Kovach (2000) describes as regulated inner retreat for the person at this stage of dementia. It may be that intensive stimulation by others can only be tolerated for relatively short periods. Mr Artist daughter used rosary beads using well-remembered body movement and prayers to re-engage her father during these periods. These more subtle approaches used by some family and staff members are not recorded in care notes and therefore are only used by those individuals. Engagement using the senses, spiritual and social connection were perceived to bring comfort to the person at the end stage of dementia, according to focus group findings from bereaved carers (Fleming et al, 2015). Family and staff generally wished for more opportunities to engage and most would have liked more time for frequent engagement and one to one contact. 5.11.4 Theme four: Interpersonal Relations in the Life of the Person with Severe Dementia This theme was common to all the case studies, indicating the continued importance of interpersonal relations. Early in the data collection it was clear that the relations still mattered between and among the person with severe dementia, the family member, staff member and others in family and friends and within the care environment, evidenced by the behaviour of the person with dementia as they responded to the overtures of others. Hughes (2013) suggests that the core aspect of care is the shared connections between people that create meaning. This relational focus is also considered to support dignity in care for the person with dementia in a care home setting (Heggestad, Nortvedt and Slettebo, 2015).
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Family and staff seem to each have a view and position the person with dementia in different ways, while the family hold the past the staff manage the present. Family and staff returned again and again to the emotional connections they worked to maintain. Family expressed the belief that they hold the past, as they know more about the person’s previous life and see the muted attributes and actions they have had. Some see even small actions as echoes of the person they remember, Mrs Cook always liked to be well presented and her daughter seen this attribute in her rolling and adjusting of her clothing.
The family use memories from the past with positive
connotations and are careful not to introduce topics that they believe might distress the person. Prompts in the form of pictures and music are used to support conversations. Staff manage the day to day care, trying to maintain the expressed wishes of the family where possible. Those staff interviewed all had attended training in person centred care and the language they used reflected this. In this study the person was always referred to by their name and reflecting an individualised focus in contrast to a study where staff referred to ‘cases’ ‘the respites’ and ‘lifters’ (Fleming et al, 2015). Staff place considerable value on the family visits and would use these to compare the perceived quality of life among the residents. Unsolicited they would mention other residents whose quality of life was not as good as the participants, mainly due to lack of family connections.
However the
relationship between staff and family can be distant and there is no evidence of the relationship-focussed approach advocated by Nolan et al (2006). There is a sense that staff provide a service for family and this can cause tensions when staff feel they know the person better in the present yet also have to meet family expectations. This is shown in the sense that staff prefer to make the person peaceful and not disturb them more than they have to with the family who feel that they would benefit from more interaction. Despite this there are some common aims and family and staff wish the person to be content “at ease” “gratified” or “comfortable”. In particular it became obvious in all the studies that those relations had a greater or lesser impact on the person with severe dementia, from differences in views about the positioning of Mrs Gardener at the window or
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facing the other residents to the staff who expressed feelings for residents and families resonating with notions of kinship and affection. 5.11.5 Theme Five: The Illusion of Home The theme was more strongly represented in two case studies, in the remainder the concept of home or being at home was implicit. In all the case studies the family members express a desire for a safe environment and staff strive to meet these expectations. Family and staff focus on issues of safety and contentment. However, the sense of home is less explicit in the person with dementia. While they evidence a sense of being in a familiar place there is not reactions beyond acceptance to daily life. While most of their waking hours is spent in the communal sitting room their person possessions and familiar objects and pictures remain in the bedrooms. In Mr Artist’s case the staff saw his room as like his own home, partly because of the effort the family had made to make it look like his previous house. Fleming et al (2015) suggest that application of the concept of ageing in place as in being in a familiar environment can be enhanced by the use of familiar possessions. However his daughter did not see any difference in her father’s response between his bedroom and the sitting room. Mrs Cook’s daughter while not sensing that her mother felt at home had come to feel that the care home was like her mother’s home and she felt at home when she visited. Fleming et al (2015) used focus groups and Delphi techniques to identify the most important aspects of the environment of the care home for people reaching the end of life with dementia and they conflated the sense of feeling at home with a feeling of familiarity experienced by the person and the family engendered mainly by personal belongings. Mr Artist is considered to feel at home by the carer as he is among his own possessions. Mrs Flower’s nurse asserts she likes being in the home. The illusion of home was also strengthened for family members who bring objects and pictures from home that had been meaningful, echoes of how life was lived. The lifelong religious practice of Mrs Flower, Mrs Gardener and Mr Artist was reflected in the statues and rosary beads prominent in their bedrooms. The paintings produced by Mr Artist and Mrs Musician graced the
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walls in their rooms. The CDs and DVDs of music loved by Mrs Walker filled her shelf. In all cases bedrooms contained items from home, including personal items and photographs. In efforts to maintain the illusion of home staff sprinkle holy water on Mrs Flower’s bed because she can no longer use the rosary beads to pray as she did before. Mrs Gardener had little toy farm animals to remind her of her early life on an Irish farm. Her daughter arranges these on a table in her room and staff are careful to keep them in exactly the same position. Mrs Walker’s music is played and staff sing along when she is being washed. However possessions are not always maintained and Mrs Flower’s daughter finds a picture she considered important to her mother in a drawer, Mrs Cook’s daughter moves her mother’s bed each week towards the wall and staff move it back to the middle of the room each week. Mrs Musician’s classical radio station is changed to a more middle of the road music station. Family visits were generally conducted in private bedrooms away from the main sitting room. However, although the family members were all positive about the care home and the physical care provided, the remainder did not refer to the care home as ‘home’ for their mother or wife. Mrs Gardener’s daughter hoped her mother believed that she was at home in Ireland now. The remainder of family participants were more concerned that the person was safe and secure now after some of the very challenging episodes in their journey through dementia. Lopez et al (2013) found that this was a key element of what family expect of person centred care, expressed not only in the sense of being in a safe place but that family felt safe leaving the person to caregivers. All the family members agreed that the care home was the best place of care for the person now, even if there was still considerable grief expressed about the condition wrought by dementia. Efforts were made by family and staff to make the bedrooms homely in displaying and sometimes using personal possessions. Ina report by Fleming et al (2015) people with earlier stage dementia and carers identify the importance of a homely care setting. However most of the group spend the daytime hours in a communal sitting room where no personal objects are available. The exception was Mrs Gardener’s book and beads. There were no
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other artefacts to touch in the space until mealtimes. The person then used touch as a reaction or response to internal stimuli when Mrs Cook wiped her nose or external when Mrs Flower held on to the lifting aid or Mrs Gardener accepted a cup from staff. Touch was mainly focussed on the person’s body seen in the tidying, smoothing and brushing movements of Mrs Flower and Mrs Gardener or in the rolling and folding of clothing by Mr Artist and Mrs Cook. Mrs Walker and Mrs Musician frequently touched or rubbed the same body part. 5.12 Summary of Findings I set out to explore the experience and perceptions of quality of life for the person with severe dementia living in a care home, considering this topic important and weakly represented in research. Using thick case descriptions of six people with severe dementia (FAST 7), I have provided an account of that experience constructed from a range of data sources and interrogated through the lens of two core theorists on quality of life Lawton (1997) and Hughes (2011). Inherent in these case descriptions are the perceptions of the key informants and other sources of data, together with my own efforts to understand the important aspects developed from this study. All six cases were analysed within a cross case analysis to deepen understanding and develop themes that draw together commonalities and interrogate differences. The findings show that there are key concerns about the altered balance of factors influencing quality of life for the person at this stage of dementia. These findings demonstrate the importance of a deep and nuanced understanding of the experience, perspectives and factors that might influence quality of life at this particular stage of dementia. The gaps in the literature identified in chapter two and the outcome of this collective case study reinforce the singularity of quality of life at this stage of dementia.
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Chapter Six: Discussion, Recommendations and Conclusion 6.1 Introduction In this chapter, by returning to the themes derived from the cross case analysis I outline and analyse the key assertions arising from this study. To rigorously examine these I discuss the merits and limitations to be considered in the interpretation of the study findings. I draw out recommendations arising from the study findings and assertions are related to practice, research, education and policy. The aim for this study has been addressed by a deeper understanding of the topic, developed through a rich account of the experience and perceptions of quality of life for the person with severe dementia (FAST 7) living in a care home. This contribution addresses a key gap in the literature where there is a lack of recognition and a paucity of research and this is one of the few studies that focus on a clearly identified group of people with severe dementia (FAST 7). This collective case study approach has drawn together the findings of the six case studies to identify this distinct period in the life of a group of people with dementia where experience, perceptions and factors that influence quality of life may still be discernd, although at times overlooked. The aims and objectives of this study are outlined below and addressed within the discussion of the key assertions arising from this study. Research aim To explore the experience and perceptions of quality of life of the person with severe dementia living in a care home, using a collective case study approach. Research Objectives: To develop an understanding of what might influence quality of life for the person with severe dementia living in a care home. To observe responses, behaviours and reactions of the person with severe dementia, to their daily life in a care home. To explore perspectives of close family and staff about the person’s quality of life.
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To examine how routinely gathered records documents, care records, rating scales and the environment reflect quality of life perspectives. These objectives were fully addressed by the collective case study approach used in this study and the findings and themes developed from the six case descriptions informed the development of four key assertions. These assertions make an important contribution to understanding quality of life and provide insights into the specialised knowledge and skills required to enhance the experience of the person with severe dementia (FAST 7). 6.2 Key Assertions Assertion One: Observable dimensions of quality of life can be discerned using sensory and embodied experiences, grounded in past and present knowledge of the person with severe dementia. Assertion Two: Family and care staff can influence quality of life when there is a shared and nuanced understanding of the small things that make a difference in the moment of care. Assertion Three: Shaping quality of life for the person with severe dementia involves recognition that the fragile balance of influencing factors must be continuously monitored and refined. Assertion Four: Quality of life for the person with severe dementia is complex and multidimensional and at this stage of the condition in particular there is a need to refocus through a new perspective to deepen understanding of the experience. 6.3 Merits and Limitations of the Study Before discussion these assertions, it is important to recognise the original contribution of this thesis, alongside consideration of the merits and limitations of this study. Since I began this study there has been a tremendous increase in interest in dementia, driven initially by the burgeoning interest in the impact of the rising numbers of people who are diagnosed and in no small part by the involvement of people who have dementia in the earlier stages of the condition. The ideal of living well with dementia is beginning to be part of everyday language about dementia,
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however this has not yet been integrated into the narrative around severe dementia. Therefore this exploration of the experience and perceptions of quality of life of the person with severe dementia living in a care home has made a contribution to developing a refocused narrative about this stage of the condition. A key contribution of this study has been to reveal the experience, perceptions and factors that may influence quality of life change, but continue to be discerned in the person with severe dementia (FAST 7). Within the limited literature about quality of life at this stage of the dementia, the recurring theme about quality of life in dementia is that it is complex, multidimensional, continually changing and cannot be reduced to dimensions and normative measurement. This study has not attempted to identify these dimensions that may constitute quality of life in severe dementia, as this remains undetermined in the literature (O’Rourke et al, 2015). Instead, using a collective case study approach presented the opportunity to place quality of life for person with severe dementia (FAST 7) as the focus, introducing a diverse range of data sources to integrate context, people, processes and environment. This thesis has contributed to the topic of quality of life in severe dementia firstly by adding to the limited literature on severe dementia. Secondly by contributing to the development of a refocused approach to quality of life in severe dementia. Finally I have continued to develop the case study approach to research in dementia by deepening understanding of a seldom heard group. There are few reports on this clearly delineated group of people with very severe dementia (FAST 7) living in a care home setting, yet without a clear understanding of the co creation of quality of life, there can be no opportunity to seek useful ways of promoting positive approaches and implementing these in practice. My research has added to the limited body of research on severe dementia by presenting an in depth investigation into the experiences and perceptions of the key aspects of quality of life for the person with severe dementia (FAST 7). I argue that there is a considerable gap in both addressing a singular and specific period of the person’s life with dementia and understanding what might influence their quality of life. Therefore it was important to involve this
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group of people with complex co-morbidities, who are vulnerable to all aspects of care and their environment. Further, it is clear that the numbers of people living to this stage of dementia will continue to rise for the foreseeable future (Prince et al, 2014). This study is also timely as the drive towards respecting the human rights of all people who have dementia gathers momentum. My study reflects the increasing interest in quality of life in dementia which is found in the concept of living well in the earlier stages of dementia. The later stages of dementia have not been included in this theme but there are some indicators of change, including Scottish based initiatives such as the Advanced Dementia Practice Model (Alzheimer Scotland, 2015) to guide practice. In Europe the Palliare Project is developing education specific to the advanced stage (Holmerova et al, 2016). In research on quality of life, there are large scale studies in progress, including ZULIDAD (The Zurich Life and Death with Advanced Dementia) (Spring, Eicher and Reise, 2013) and CoMPASs (Care of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge) (Jones et al, 2012). However, the impact of this research, education and policy has not yet been fully realised and outcomes may take some time to be embedded in care and practice. My ontological perspective of social constructionism brings important perspectives to the research process, driving the iterative development of my understanding of the topic. While being aware that the person with severe dementia is vulnerable to co-created perceptions of others who do not have dementia, the close observation of behaviour and how the person is perceived and remembered by others is incorporated by recognition of agency (Koehn, Kozak and Drance, 2011). However, it is clear that the subtle responses of the person at this stage of dementia reduces the impact they might have on this process where others have a greater voice. Maintaining the assumption of person with severe dementia as an agent in this study was an effort to redress this balance of power (Koehn, Kozak and Drance, 2011). The concept of agency for the person with severe dementia and the impact on the concept of quality of life is presented within the epistemological perspective interweaving Lawton’s (1997) quality of life
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framework and the philosophical theories of Hughes (2011). Lawton provides one of the few conceptual frameworks of quality of life in dementia, influencing many of the standard measures of quality of life (Bowling et al 2015), yet this framework does not directly address agency of the person with severe dementia. By including the theory of the situated embodied agent (Hughes, 2011) I advanced this concept of agency, influencing my assertion that it is possible to discern the responses of the person with severe dementia. In adopting the view that the person had no agency, then behaviours, experiences and perceptions elicited from the study may have been viewed as either movements of the body caused by other’s actions or as reflexive responses. However, neither of these explanations accounts for the observed active and responsive movements in the absence of a stimulus and I support the concept of the person as a situated embodied agent. The use of collective case study method based on the qualitative approach of Stake (2010) was relatively novel but particularly valuable for those groups who are underrepresented. A literature is beginning to emerge using this approach with other such groups, males in care homes (Bartlett, 2007) people with a learning disability and dementia (Watchman, 2013) and those in unique social locations (O’Connor, Phinney and Hulko, 2009). I took the view that inclusion could be enhanced by using case study as reports have identified the challenges of including underrepresented groups in large scale research studies (Alzheimer’s Society, 2010). However the collective case study approach is not without tensions, specifically the concept of the ‘particular’ and the ‘general’ of case study (Flyvbjerg, 2006; Stake, 2010). This tension was reflected in this study as I sought to understand the particular of each individual case study while considering the collective and general learning about the phenomenon from the collective cases. In understanding the phenomenon of quality of life for the person with severe dementia I have moved between the single and collective cases in interpreting, analysing and reporting this study, while respecting that the particular experience of the individual does not preclude looking for commonalities.
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While commonalities have been identified, the findings of this study are not generalizable but transferability can be sought by considering these alongside what is already known about the person with severe dementia living in a care home. These participants do have similar circumstance compared with the Care Home Census Scotland 2006-2015 (Information Services Division, 2015) in age and length of stay in care. However, I expect aspects of this study will resonate with families of the person with severe dementia (FAST 7) and staff who might care for them. A comparison of study findings and personal and professional experience is considered to be one of the core strengths of the qualitative case study (Stake, 1995). Throughout this study I have sought to discuss the strengths and limitations of the methods, process and design and some have been reiterated here. The small sample size might be criticised, but this is offset by the depth achieved from gathering multiple perspectives and on the mixed methods and range of data sources. This has generated rich data and complies with the ethical need to limit participation and the demands placed on persons who lack capacity and are vulnerable with sufficient data to address the research aim. Rigour has been promoted by a clear decision trail and addressing the criteria of credibility, dependability and transferability (Koch, 2006; Houghton et al, 2013). These criteria are achieved through a rich account clearly derived from the data, identifying my assumptions and examining alternative explanations and presenting my findings comprehensively and completely to afford readers the opportunities to decide if these are transferable to another context (Stake, 2010). In reporting my findings I have endeavoured to provide a clear and understandable account, being true to Stake’s (1995, 2010) rich description, allowing a vicarious experience for the reader. Grounding my findings in the data and showing how themes are derived from the case descriptions, I have sought to reflect the conditions and perspectives of the participants and enhanced the credibility of the study (Elo et al, 2014; Koch, 2006). I began this study clearly identifying that I shared the assumption of the situated embodied agent with Hughes (2011) but have shown through
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discussion using empirical data that I sought to find alternative explanations to challenged rather than taken for granted. There can be a temptation to avoid some of more negative aspects of such a sensitive subject (LaFontaine and Oyebode, 2013), yet I continue to advocate that even in extremis the person with severe dementia is a situated embodied agent. I had been aware that my previous experience and knowledge in this field could have been beneficial in sensitising me to findings but could also have influenced my interpretations. Therefore assiduous reflection supported by discussion with my supervisory team was key to ensuring rigour in interpreting my findings. I cannot claim to have fully exposed the subjective experience of the person with severe dementia who has few nonverbal responses and limited facial and body movements so meaning can only be inferred based on my own interpretation and that of others. Conversely, there is no evidence to suggest that the person with dementia uses different nonverbal communications and gestures or change the meaning of life long responses. Additionally, using multiple sources of information provided opportunities to confirm
and
disconfirm
assumptions.
Nonetheless,
addressing
the
communication challenges experienced by the person with severe dementia (FAST 7) remains an unresolved issue in research, including this thesis, it is important to continue to try to understand implicit and intended meaning (Bowling et al, 2015). In reporting these findings I remained aware that developing themes from this rich and complex data set could produce similarities and overlap and a risk of moving away from the research aim. The diversity and volume of data compounded this challenge. This was attenuated by the process of writing and re writing the findings and developing a robust process of data management and analysis, together with interrogative discussions with my supervisors. Using an iterative synthesis I set up between the research questions and the data throughout the analysis of the data, I sought common meanings in the data but remained aware of the research aim of the study (Stake, 2010). Having examined the merits and limitations of this study I now return to the key assertions identified from the empirical findings and will explore these in more detail.
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6.4 Discussion of the Study Assertions 6.4.1 Assertion One Observable dimensions of quality of life can be discerned using sensory and embodied experiences, grounded in past and present knowledge of the person with severe dementia. Despite living in the context of severe dementia, the six people in this study could respond to internal experiences, sounds, visual activity, taste, discomfort and touch. A few could say single words, some could indicate by expressions of emotions such as crying, most by facial expressions such as smiling, but all by some movement or response of the body. Despite the challenges of sensory impairment and reduced body movement, these are residual abilities that can be still be discerned by close and sensitive observation. These subtle responses may be considered key to how we understand the experience of the person. Social contact with others is not simply language based but is identified in body responses and gestures and here in the efforts of the person with dementia to make contact with others. Hughes (2011) considers the concept of the situated embodied agent is relevant in severe dementia, supported by an ethnographic study of embodiment reported by Kontos (2012). Kontos (2012) also identified social behaviour such as people saying ‘thank you’, paying compliments and showing disgust, less obvious in this study where people had little more than a few sounds or words. Family members used the senses to make connections with the person and would use touch, music, prayer and food to engage their interest and responses. Staff provided occasional sensory activity such as Mrs Gardener being given a book of flowers to look at, Mrs Walker and Mrs Musician having music playing in their rooms and Mr Artist being seated near the television. This stimulating of the senses is considered an important element of person centred care, Kitwood (1997) termed this ‘timalation’ and perceived this as working positively to engage with the person. Staff also used the senses framed within periods of fundamental care such as washing, dressing and assisting to eat and drink. Staff also used touch, particularly when the person
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was in obvious distress, as when Mrs Walker begins to cry when she is in pain and then staff stroke and cuddle her until her pain medication takes effect. However some of these care episodes were less satisfactory and perceived as unwelcome to the person, Norberg, Ternestedt and Lundman, (2015) caution that interpretations of sensations may well change at this stage of dementia. Fleming et al (2014) in a study of residents with moderately severe dementia identified that sensory input should be both understandable and controlled while ensuring that useful stimulation is enhanced. While the senses could provide as opportunity for engagement by staff this was variable and frequently missed, particularly more subtle responses such as efforts by the person with dementia to maintain eye contact. Both Mrs Flower and Mr Artist frequently sought eye contact when staff were close yet there were few instances when these efforts were returned, although occasionally a member of staff would react and speak to them briefly. Hughes (2013) identifies the importance of understanding body responses and emotions, in the absence of language, as a key part of engaging with the person. While the staff generally responded to the person using language, particularly using the person’s name, Hubbard et al (2002) found that the person with dementia was more responsive to the nonverbal behaviour of others. However, family and staff in this study frequently referred to the perceived demands of discerning and understanding the person. Both groups talked about feeling what the person might be expressing but were cautious asserting this because of the person’s minimal and subtle responses. They were clearer about preferences and choices the person might have, as these could be connected to more obvious behaviours. Hughes (2013) suggests that we can begin to understand the person with dementia when we can open ourselves to the idea of engaging with the person in terms of feeling and intuition. In this study family and staff recognised a range of emotional states in the person. Family members talked about the person being contented most of the time, recognising some of what the person might be feeling based on their emotional connection. Mrs Musician could still show affection and kiss her
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daughter’s cheek. Mrs Cook was considered by staff to be a happy person and likely to sing spontaneously. Staff members expressed a fondness for the person they cared for and this created sympathy about how they perceived the person was feeling. Signs of unhappiness were addressed by staff using increased activity, moving the person to another space, holding their hand or giving them food or drink. Staff also responded to overt signs of happiness and would engage with any expression of this, such as Mrs Walker’s laughter. Magai (1996) has suggested that expression of emotion can be preserved into the later stages of dementia and this can be seen most obviously in Mrs. Flower and Mrs. Walker's tears and Mr. Artist's growling responses but also in the contentment of Mrs. Musician listening to her music and the pleasure of Mrs. Gardener using her finger to outline the flowers in her book. Not only did the people with dementia in this study express emotion, they were perceived as recognizing the emotions of others. Mrs. Flower's daughter tried to be cheerful when visiting her mother, since previous visits, where she had been upset, resulted in her mother crying. Mrs. Walker responded to her caregiver's positive response to music that created shared laughter. Bucks and Radford (2004) in a study of facial and auditory stimuli and emotional response in people with mild to moderate dementia, suggest that recognition of emotion in others is preserved. However, it is not known if or when these responses might diminish in the later stages of the condition. Some expressions of need or preference went unnoticed by staff in the general busyness of the day, especially if these were quietly and subtly expressed, such as Mr Artist’s attempts to engage by looking at the nurse while she looks and talks to others. Phinney and Chesla (2003:294) in a phenomenological study with people who had mild to moderate dementia, describe a change to “the body becoming silent" where the person becomes less physically involved with others. Here the body appeared the primary means of connecting with others and the lack of obvious body movements affected the recognition of need by others. Hughes (2013) suggests that deeper engagement is possible by connecting with how the person is feeling yet Mrs. Flower’s unchanging facial expression was an enigma to staff. Her daughter considered this less concerning as she considered that her mother
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had never responded effusively and she had not seen her cry and rarely laughed. To support this understanding family are more likely to use the person’s narrative and make links with the person’s past life and attributes. The subtle responses and behaviours of the person with severe dementia can be better understood with more knowledge of the person past and present. Cohen-Mansfield (2013) identifies that the needs of the person resonates with their life history, their previous habits and responses together with the current context of care. Despite the cognitive losses the person with dementia experiences it is important to focus on those preferences they may have had in the past, not simply what they appear to prefer in the present. These past preferences are still of importance even if the person no longer appears to remember or recognise them as a result of dementia (Jongsma, Sprangers and van der Vathorst, 2016) The concept of a narrative implies a story that begins in the past and continues up to the present, yet for the participants in this study this narrative is not always continuous or shared. Family members unanimously identified that the research interview for this study was the first time they had fully expressed the story of the person’s journey since transition to the care home. The richness of information provided for this study from family was not evident from the care notes and staff could only provide random pieces of information related to the person’s life before the move to care. Gaining such intensive knowledge about the person’s past life is considered to provide an opportunity to enhance care (Holst, Rennemark and Hallberg, 2011; Parahoo, 2005), understand the person’s communication (Eggers, Ekman and Norberg, 2013) and increase empathetic engagement by staff (Egan et al, 2007). A lack of information about the person’s life impacts on the ability of staff to create opportunities to engage meaningfully (Chaudhury, 2002). The impact of the absence of a coherent and complete narrative of the person’s life can be seen in the use of objects and possessions in the bedrooms. Staff generally took little notice of the photographs and objects in the space and although some did refer to these they were not always clear what they might mean to the person. Staff generally reported that the person
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had little interest in these objects any more. Yet family members made use of these during visits such as Mrs Gardener’s little farm animals, which her daughters used to stimulate memories from her mother’s past, living on a farm. Mrs Musician’s daughter spent long periods trying different objects as well as music to stimulate her mother’s responses. Norberg, Ternestedt and Lundman (2015) related the possession of objects from the past to the concept of homecoming in people with advanced dementia. While it was important to some participants to have their own possessions in their rooms, for others there was no recognition of the possible connection with being at home. Oudman and Veurink (2014) in a two year follow up study of people with advanced dementia, found as dementia advanced the participants felt more at home and less isolated, influenced perhaps by lack of awareness of the setting of care When objects were presented to some of the participants there was a response, such as the keen interest shown by Mrs Gardener in her book of flowers, Mr Artist closely watching the moving figures on television and Mrs Flower’s avid watching of any movement. It may be that there is a need for stimulation that should be developed particularly for the periods spent in the communal space. Mrs Cook who had been a person who was always busy with her hands, not only cooking but also knitting from complex patterns, still fussed over the pleating of her skirt and folded and re folded her cuffs as she sat. Norberg, Ternestedt and Lundman (2015) found that no resident held possessions with them in communal areas, identified as part of a letting go of home in residents with advanced dementia (Buse and Twigg, 2014). Yet this letting go is not seen in the efforts of family in this study to maintain these possessions in the private spaces and the positive response of the person with dementia when provided the opportunity to engage with appropriate objects. I have shown here that it is possible to discern dimensions of quality of life for the person with severe dementia (FAST 7) by engaging with the senses and the embodied responses of the person. This is enhanced by an understanding of past and present knowledge of the person with severe
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dementia, perceived as vital to staff understanding the person’s communication (Eggers, Ekman and Norberg, 2013). 6.4.2 Assertion Two Family and care staff can contribute to quality of life when there is a shared and nuanced understanding of the small things that make a difference in the moment of care. Family and staff recognise the impact of some small things on the person but there was a sense that much of this was dismissed as unimportant, or missed in the moment of care. Many of these factors could influence quality of life but generally not shared with others and therefore knowledge about the person is inconsistently woven into interactions. When concerns are noted and the outcome is negative, these are more likely to be shared with others, as in the negative reaction to being washed by Mrs Musician. However, when these create a more positive response they are less likely to be shared. Mrs Flower’s enjoyment of sweet foods is recognised by her daughter and the staff member but not shared with others who provide care. Care actions that create positive responses such as the staff member who created connections with Mr Artist by maintaining eye contact was not noticed or noted by others. The staff member who followed to provide the same care action afterwards did not use this strategy and Mr Artist looked away and lost interest in the food he was being helped to eat. There were practical barriers to developing this shared knowledge among family and staff. Contact between family and staff either happened at formal reviews or was opportunistic and happened at the beginning and end of visiting times. Staff worked long shifts over three days and family visited for approximately an hour, up to three times a week, reducing the opportunity for sharing information. Family visits were mainly in bedrooms with the person and staff did not observe successful connections or interactions being implemented. Family did not often join others in the communal sitting room in the home, unless there was a special event being held. This preference for private space has been identified as important to family and provides a space away from other residents and staff (Moyle et al,
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2014). However, this distance reduces the opportunity for sharing the subtle aspects of engagement and care that might make a difference. Staff placed great value on family members but did not always agree with their expressed wishes for care and there was little opportunity to discuss these occasional differences. Despite this family and staff made efforts to work together to maintain standards of care. Staff address the person with dementia, using their name or title, recognise that they have preferences and try to meet these. They ensure that the person is presented and placed as requested by the family and yet identify that the person may not always wish this, recognising that they have agency. Staff value family members and the support and love they give to the person. Family work to protect the person both by respecting the life they have lived and in the relationships they struggle to maintain. The family members generally appreciate the care provided by staff and Mr Walker describes this as the staff as not only caring for his wife but also caring about her, described by Hughes (2013) as staff showing they could be with the person rather than simply doing care activities to them. When family and caregiver move closer, as occurred when Mrs Musician became ill their communication became more intense, they seemed to work more intimately and were more connected. In a study of family centred care in nursing homes, Lopez et al, (2013) found that families’ valued connections with staff and greater involvement improved staff attitudes to family members. Family members had more opportunity to recognise the small things as they visited regularly and were able to focus on the person in a small private space. This provided opportunities leading to engagement that were sustained and if lost could be re-established. They used the knowledge they had about the person’s narrative, or life story, and spent more time trying to maintain connection and engagement. Staff on the other had spent more time with the person but in carrying out activities of living, where they did not consistently strive to establish a connection, despite the opportunity at these times for embodied engagement (Hughes, 2013). Believing that the person with severe dementia is able to connect is an essential element in improving the quality of communication (Eggers, Norberg and Ekman, 2005). If there is
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a lack of response from the person or they only connect for a brief period of time opportunities for engagement can be lost as staff move on too quickly (Lee, Chaudhury and Hung, 2014) The staff members in this study expressed positive regard for residents, were trained in person centred care approaches and keen to provide good quality of care. This is reflected in the work of Talbot and Brewer (2015), who studied a group of care assistant and found that the empathy they expressed negates some of the previous work in this area. The care they took over Mrs Flower’s religious background was displayed not only in they way they referred to this as important to her, but also in actions where they sprinkled holy water on her bed before she went to sleep, despite not sharing knowledge from her faith group. Previously, studies have identified that caring for the person with dementia provides limited work satisfaction and that the person was more often perceived negatively than positively by staff (Brodaty, Draper and Low, 2003). Although positive associations were found between job satisfaction and staff who had a person centred approach (Moyle et al, 2011). Feeling adequately prepared and having a person centred attitude was associated with sensitive approaches to the person and job satisfaction by Zimmerman et al (2005). Conversely lack of knowledge is identified as increasing stress for staff (Barbosa et al, 2014). The small things that could make a difference in daily life for the person with severe dementia (FAST 7) are simple, yet complex. The act of doing something to influence quality of life could be simply putting on music the person is known to enjoy, at an appropriate volume. Yet this requires knowledge of the person, being aware that music was welcome to the person at that moment and that the intervention changes when the person no longer wishes the experience. This attention to the small things is seen in some of the care practices for Mrs Musician when she is experiencing discomfort and the staff move her to her room to lie on her bed. They continue this action by putting music on they believe she would enjoy and staying with her singing and holding her hand until she starts to laugh. Conversely, lack of attention is also observed when Mrs Flower looks intently at the staff member putting on her apron for a meal and receives no reciprocal move to connect. The
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underdeveloped knowledge and sharing of care actions is seen most obviously in personal and intimate care. In Mr Artist’s intimate care both staff and family accepted that he found this unwelcome and resisted them. While the staff member expressed a recognition that this could be due to Mr Artist’s embarrassment at this exposure in front of others, these observations were not shared and without further exploration of other strategies for care, nothing changed. Positive and intentional acts can make a connection with the person who has dementia and have been identified as an expression of respect and promotion of dignity and personhood (Carr, Hicks-Moore and Montgomery, 2011). Understanding the response to care approaches and sharing that knowledge with all involved in care could lead to a more refined understanding of what might make a difference to the quality of life of the person. Despite some of the challenges identified in developing meaningful relations among the person, family and staff made effort, some more successfully than others. The person with dementia needs to be viewed in terms of the relationships that surround and support them, not simply because they depend on others for care activities but because they are human beings (Hughes, Louw and Sabat, 2006). Here concern for the person with severe dementia was considered pivotal to the relations between family and staff but the more nuanced understanding needed to influence quality of life was underdeveloped. 6.4.3 Assertion Three Maintaining quality of life for the person with severe dementia involves recognition that the fragile balance of influencing factors must be continuously monitored and refined. Building on this shared and nuanced understanding between family and staff would allow the continuous refinement of care and engagement that might maintain or improve the fragile balance of quality of life for the person. Most of the family and staff members recognised that there were changes in the responses from the person as they reacted to the environment and care. Those more subtly expressed needs were often transient, changing from
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moment to moment and sometimes missed. Being responsive in the moment of care is dependent on the staff member being aware of expressed needs and having the appropriate knowledge and skill to respond in a timely way. Meeting the individual needs of the person requires a fluid and responsive approach to care (Cohen-Mansfield and Bester, 2006). This fragile balance can increase family members’ vigilance, as with Mrs Gardener’s daughter who watched her mother’s health carefully after a period of serious illness and pain. Changes in health or functional ability as seen in both Mrs Walker and Mrs Musician, whose physical health had deteriorated recently, caused family and staff to focus more closely on care. Pain and discomfort was the most frequent influence on sudden change in the person’s responses. Mrs Walker experience episodes of acute pain generating an instant reaction from staff, but Mrs Musician’s grimace of discomfort when her face is washed is generally not noted. This response to less obvious behaviours can be a missed opportunity to enhance the person’s experience. The physical domain is considered key in the care of the person with dementia and recognition of the importance of the physical aspects of care is considered to be an essential determinant of quality of life (Geibel, Sutcliffe and Challis, 2015; Keady et al, 2013). This focus on physical needs can conversely be considered detrimental to the person’s emotional needs as dementia progresses (Moyle et al, 2014; Willemse et al, 2015). This imperative to focus on physical health and safety can prevail over other needs for connection and engagement. Yet both create a considerable influence on quality of life. Mental health issues are also considered to have a primary impact on quality of life at all stages of dementia (Geibel, Sutcliffe and Challis, 2015). In this study using the Neuropsychiatric Inventory, Nursing Home Version, the senior nurse identified a range of observed behaviours that could be reflective of depression, apathy or anxiety. Mrs Gardener and Mr Artist were described as moderately aggressive but only during unwelcome personal care, and Mrs Cook was described as experiencing hallucinations and delusions, despite her poor vision likely creating a misperception (Jones, van der Eerden-Rebel and Harding, 2008). All rating scales indicated that that
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these reported responses caused no more than minor distress to the person, as perceived by staff. For the senior nurse rating these, there was a challenge in discriminating between the psychological cause of observed behaviour and the physical frailty and discomfort of these participants. More detailed and comprehensive assessment could assist in this process, however in this study available information did not clarify this complex set of behaviours and responses (Mjorad et al, 2014). Some of the participant received low doses of antidepressant medication over a long period, yet staff found recognition and differentiation of conditions such as depression and apathy difficult to discern. Depression has been associated with poor quality of life in care home residents (Barca et al, 2011) while apathy has been associated with reduced well-being (Mjorud et al, 2014) but the connection with quality of life is considered tenuous (Gerritsen et al, 2004). None of the family or staff participants made any mention of mental health issues in relation to the person with dementia. Changed responses were also reported in often sudden and unexpected episodes of lucidity where the person acted, reacted or verbalised in a way considered more alert and engaged than usual (Normann et al, 1998). When Mrs Cook began to respond to questions about food preferences, staff were taken aback and began to converse with her. This unexpected response occurred when I observed Mrs Musician clearly sing the chorus line of a song or when Mrs Gardener becomes ’keyed in’ to her daughter’s presence and prompting and begins to respond. Normann et al (2006) in a survey including 92 care home residents with severe dementia found that these episodes of lucidity occur in over 50% of people with dementia and are most likely to occur when the person was interacting closely with a carer. Mrs Gardener’ daughter talks about her mother being on standby and then switching on to her and Mrs Musician’s describes breakthrough moments when her mother is attending to her. While a study of lucidity reports over a single week of care from a range of carers and must be viewed with caution (Normann et al, 2006) these are built on previous case studies using tape recorded material over an extended period with people who had severe dementia (Normann et al, 2002: Normann et al, 2006). Hughes (2011) identifies this lucidity as an
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indicator of awareness, reflecting the work of Clare (2010) who has identified a fluctuating response at this stage of dementia. Being aware of these periods of awareness or lucidity could be helpful in providing staff with an increased opportunity for connection. This opportunity could be found in interventions that consistently generated observable reactions and responses in the participants, these were during personal care, eating and drinking. All these participants needed help with eating and drinking and were dependant in personal care activities such as washing and dressing; generally up to 90% of people in care homes have similar profiles (Rader et al, 2006). This activity around fundamental care was the most frequently occurring in the person’s waking day and was the core work of most of the staff in the unit. This fundamental care as activity is documented in all the plans of care and lists of interventions focus on best practice and standards. There is little information about using care episodes as a therapeutic way of engaging with the person. Bennet, Ward and Scarinci (2015) indicate that documentation does not support staff efforts to communicate with residents when limited information about assessment and unclear strategies for care. In the care notes there were short sentences about observing the person’s nonverbal communication, for example, but no detail about how this might be used in care. There was no strategy to record most of the subtle approaches that were successful, although staff communicated some of these informally to one another. Family information about likes and dislikes in eating and drinking are noted, however only on a few occasions are staff noted to reciprocate, with no shared notes between family and staff. Personal care is discussed only when staff have to inform family about the person responding negatively to care, as in Mrs Gardener’s case about her resistance to washing. Intimate and personal care such as washing and showering generates a number of resistive responses and this care can then be considered unwelcome (Sloane et al, 2004) when this occurs it becomes a barrier to person centred care (Konno, Kang and Makimoto, 2014). Geibel, Sutcliffe and Challis (2015) found caregivers for the person in the severe stage rated quality of life lower for those who needed more assistance
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with getting to the toilet, being moved and being helped to eat. This group of staff did not appear to consider dependency as a key aspect but rather identified having no family to visit or acute pain as more likely to indicate a less positive quality of life. This group also considered resisting personal care had more impact on the quality of the person’s life than being assisted with care, suggesting there may be different aspects of care activity and provision connected to and influencing quality of life (Eggers, Ekman and Norberg, 2013). There was some intuitive and responsive care by some staff members and evidence of deep affection shown within some relationships with residents, particularly Mrs Musician and Mrs Walker and their staff members. This reflects a key principle of recognising the humanity of others where residents are cared for but also cared about (Hughes, 2013). Being with the person with severe dementia in their own time and their own world can allow a deeper understanding of their experience (Sorrell, 2006). This can also support connections by being with the person in the moment and is reflected in the metaphor of ‘slow nursing’ (Lilliekroken, Hauge and Slettebo, 2015). This being with the person is also identified in a phenomenological study of nursing home staff; themes such as ‘doing one thing at a time’ and ‘bringing joy and contentment’ were identified as core aspects of practice that contributed to quality of care and quality of life (Lilliekroken, Hauge and Slettebo, 2015). A similar study by Helleberg and Hauge (2014) reflect this and identify findings about choosing the right time and tempo for care. Some of the family and staff members could be seen to engage in this deep and harmonised connection, but this fluctuated depending on the activity, person and time. Other care was less engaged and more task based, when it was clear that this was more about caring for the person rather than caring about the experience. My findings show that most staff and family interviewed were aware of the challenges in maintaining this balance of care and quality of life. However this evidence suggests that the influencing factors that could enhance and refine understanding to maintain the fragile balance in daily life were not consistently discerned, nor did they generate a shared response.
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6.4.4 Assertion Four Quality of life for the person with severe dementia is complex and multidimensional and at this stage of the condition in particular there is a need to refocus through a new perspective to deepen understanding of the experience. This is a singular period in the life of the person with dementia and concerns and factors that might influence quality of life require altered and particular attention. These include the impact of care actions and the interpersonal relations that support the person with severe dementia. Taking into consideration the fragile and fragmented lives of the participants with severe dementia (FAST 7) in this study, there is sufficient empirical evidence to suggest that there are also assets and strengths that might be exploited to enhance quality of life. Additionally the experience of dementia varies with each individual but there are sufficient commonalities to allow assertions that can be shared. This supports a refocusing on what might be discerned and enhanced to deepen understanding of quality of life in severe dementia by building and sharing knowledge. This brings into focus the importance of what might be perceived as the small things that could make a difference rather than an acceptance that little can be done. While the profile of the earlier stage of dementia is rising, severe dementia (FAST 7) remains a less researched and recognised condition. Despite some indication that factors affecting quality of life differ at each stage of dementia (Castro-Monteiro et al, 2016; Hoe et al, 2009), there is a paucity of evidence related to severe dementia (FAST 7).
This lack of
empirical knowledge can lead to a perception that the person with severe dementia may inevitably experience a poor quality of life, and at the extreme, therapeutic nihilism. Evidence from this study has indicated the need to refocus on what might still influence the life of the person and provides an alternative view to this negative view, as the person progresses to the stage of severe dementia (FAST 7). This is important, as the current narrative of severe dementia could unintentionally and subtly change the perspective for staff from person centred to one that is ritualistic, task based and full of good intentions but
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perpetuated on gaps in practice based knowledge and a system that fails to recognise the complexity and specialist nature of severe dementia care. Conversely in this study some staff do provide person centred and positive care and there is also a need to examine this approach to illuminate the added value of expertise and tacit practice knowledge. An altered perspective and a new socially constructed discourse accepts that quality of life can be discerned and enhanced, particularly where small gains make a difference in care practice and sharing relationships support and make an impact on quality of life. While the person with severe dementia (FAST 7) has reduced interaction, facial expression, body movement and functional ability, it should not indicate that less effort is needed, rather more is required by others to discern the minutiae of the person’s experience. That experience might therefore be enhanced by small but discernible gains. I will examine this refocused view using issues from the empirical data. These include the impact of care and the interpersonal relations that support the person with severe dementia. The impact of care should focus on the senses and the body, making care practice welcome, positive and stimulating. In this study the response of the person to care they found unwelcome was a concern to staff and family yet there was little sense that it could be ameliorated. A negative and resistive response was perceived as something that happened for some people with dementia and staff responded by carrying out the activity quickly. This reaction is reported in a number of studies (Kolanowski et al, 2010; LongFoley et al, 2003, Skovdahl, Kihlgren and Kihlgren, 2003). The negative responses to unwelcome care are not only a feature of care settings, family caregivers also report issues with personal care at home (Fauth, Femia and Zarit, 2015; Mahoney, LaRose and Mahoney, 2013). Some of the family members in this study identified that personal care had been difficult to carry out even before the move to the care home. Despite this the shared experience between family and staff did not lead to identifying any way of ameliorating these responses. However there were clear expressions by staff that they would like to do this differently. Some asked if I could give suggestions for reducing resistance
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to care and one member of staff asked if this study would let them know what they were ‘doing right’. The impact on staff burnout as a result of managing this process is a concern (Konno, Kang and Makimoto, 2014). In a survey of care home staff only half of the participants reported they were proficient in providing personal care (Morgan et al, 2016), yet those who provide personal care are considered crucial to all aspects of the person’s life in the care home (Haugan, Hanssen and Moksnes, 2013; Maseda et al, 2014). Kovach (2006) suggests there has been insufficient focus on the physical care for the person with severe dementia and there is a need to increase the range of interventions to improve this. The literature has tended to focus on the staff experience of the person who finds care unwelcome. This is termed challenging behaviour (Chang et al, 2010), disruptive behaviour (Beck et al 2002) rejection of care behaviour (Ishii, Streim and Saliba, 2012) care resistant behaviour (Jablonski et al, 2011) or combative behaviour (Morgan et al, 2012). In the findings of this study the term ‘unwelcome care’ has been adopted to provide an opportunity to reframe this experience from the perspective of the person with severe dementia. Previously accepted terms, such as challenging behaviour, are instead viewed as care provided in a way that the person with severe dementia finds unwelcome. This perspective challenges others then to make care welcome to the person and shift the responsibility for action. This concept of making care welcome is not only important in personal care but also addresses how to approach the need for appropriate stimulation of the senses and body of the person. The environment is changed and limited for the person with severe dementia and immediate surroundings become more important (Missotten et al 2007). It is possible to focus on this microenvironment and construct a safe and supportive space for the person in the long daytime hours (Jones, van der Eerden-Rebel and Harding, 2008). Having something stimulating within the visual field and reach is advised to help the person feel safe and engaged in the setting of care, using a familiar environment to optimise function (Jones, van der Eerden-Rebel and Harding, 2008; Son, Therrien and Whall, 2002). Fleming et al (2014), in a study of residents with moderately severe dementia, identified
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that sensory input should be both understandable and controlled while ensuring that useful stimulation is enhanced. For the person with severe dementia, this approach places the responsibility firmly with the person providing the care to make this experience welcome. The principle of using familiarity within the environment of care may include the use of objects, sounds, smells and tastes. These are not only ways of providing meaningful connection with others but can also be used to prime implicit memory. Implicit memory is the unconscious effects of previous well-learned tasks and movements without conscious memory and can be used as a supportive framework until the end of life (Harrison et al, 2007; Lee, Chaudhury and Hung, 2014) This approach includes the recognition and use of objects, and is often termed unconscious memory (Parahoo et al 2005). These objects used to stimulate responses can include photographs or familiar objects, to meet the needs of the person for connection with the personal aspects of life (Chaudhury (2002).
Kontos and Martin (2013)
identify that familiarity facilitates embodied recognition and engagement in the person with dementia. In this study family members often used objects consciously as prompts, Mr. Artist's daughter used rosary beads and prayers and Mrs. Gardener's daughter used books with pictures of flowers. Staff also used some prompts related to care tasks such as giving Mrs. Gardener a tissue when she was sniffing. Even moving equipment could prime a response, as in the case of Mrs. Flower who puts her hand on the bar of the stand aid while she is being moved. Some opportunities could be missed, although most staff used ambient music; an opportunity for Mrs Flower to benefit from a multisensory group was lost, as she was not perceived as engaged in the activity due to her lack of facial expression. These prompts for the senses can be positive or negative, in this study pleasant experiences included Mrs Cook being offered favourite food and unpleasant when Mr Artist had his clothing changed. Therefore it is important to consider the particular challenges the person with severe dementia may experience in a busy care home environment. Excessive stimulation may negatively influence the person’s quality of life, including noisy staff and loud media such as television and radio. (Fleming et al, 2014).
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Excessive environmental noise in a care setting was identified as negatively affecting quality of life in a study of environmental determinants for the person with advanced dementia (Garcia et al, 2012). Even in the advanced stages of dementia, the amygdala can be relatively preserved. This can be triggered by sensory cues such as sound or vision, leading to responses that may not be entirely conscious (LeDoux, 1993). These responses can include shouting, agitation and resistance to care. Efforts to make care and sensory approaches welcome are also framed within the perspective of the fragile person with complex co-morbidities. This differs from Kitwood (1997) who asserted that the attitudes of others towards the person with dementia, has more impact than dementia as a disease. This refocus on the person with severe dementia, places this complex comorbidity and disease process as a key factor in quality of life. The knowledge and expertise to provide personal and health care therefore becomes increasingly important. The balance should shift at this stage to integrate physical heath and care more visibly in this approach. The concept of the biopsychosocial approach has much to offer the person with severe dementia. While physical health and care are increasingly significant at this stage of dementia it is also important to revisit the changes in the psychological perspective. It is particularly important to review the concept of the self at this severe stage. Matthews (2006) suggests that the person does not stop existing because they have limited access to memory or other cognitive activities. In this absence some of the person still remains and it is this diminished presentation that challenges family and staff, where the person is no longer as they were before but retain their self in embodied and sensory responses. In addition the family member carries the memory of the person as they have been throughout the journey and the staff carry the memory of the person as they were since transition to care. This was evident when family members discussed the person being there but not being the same as before while staff do not identify such radical changes from the past and focus on the person as they are now. Throughout this study the concept of selfhood was implicit in the discussions with family and staff, phrases such as
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“there is something there” “she smiles when she is happy” “she knows my voice” “then she’ll start singing” indicated that the person was still perceived as being present. However some uncertainty was seen in other concerns expressed such as, “how can you actually tell”, “I feel my daddy’s disappeared”, “a vegetable” “No one is happy in their own wee world like that”. While family and staff behaved and spoke in ways that could be seen as maintaining or diminishing self or personhood, the person with dementia could still influence how others perceived them. The expression of agency in refusing food and resisting aspects of care in this study did not necessarily lead others to perceive the person with dementia negatively but rather to respond to these efforts by either acceding to their choices or by trying to reduce the impact of unavoidable care. Kitwood (1997) and Sabat, Napolitano and Fath’s (2004) social constructionist understanding of the self is located within engagement and relationships with others. Kitwood’s (1997) construct of personhood is bestowed by others and can be maintained or diminished by interactions that enhance or detract from this. Placing the responsibility for maintaining personhood on others however detracts from the impact of the person with dementia on their own selfhood. Sabat, Napolitano and Fath (2004) on the other hand see the role of others as cooperation with the person with dementia in developing their social identity. This positioning described by Sabat, Napolitano and Fath (2004) is closer to the findings of this study than Kitwood's (1997) malignant social psychology, which places much of the responsibility on others. The person with severe dementia is presented in this study as a situated embodied agent; this is underpinned by the assumptions of a social constructionist perspective and influenced by the narrative that surrounds them. This understanding of severe dementia (FAST 7) is currently not common or developed and therefore the full opportunity to understand or enhance quality of life has not been realised. Quality of life is considered complex and multidimensional and as the condition progresses the person becomes unable to express their experience and perceptions using language. Therefore, I have identified that the person with severe dementia requires a
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more refined and intensive effort to discern the possibilities for small changes that might improve quality of life. This can be supported by an approach that includes in depth observation, sharing understanding and valuing small gains. It is important that the knowledge of the narrative is woven into every interaction and connections are made in each moment. I have indicated the changes in health status of the person at this stage means that a significant refocus is needed towards the physical and personal aspects of care. Every day care consumes most of the person’s waking day and this rather than being perceived as a task should be incorporated into a meaningful, therapeutic and welcome activity. By considering the immediate surround of the person, the body and senses and incorporating the familiar into daily life it is possible to enhance the person’ experience. Dworkin (1986) in an early philosophical discussion expresses the theory that others can view the person with dementia in two ways. On one hand as someone with dementia within the context of the life they have lived and on the other hand as someone who has dementia here and now. Bringing together these two perspectives can make the change that may preserve the self in severe dementia (FAST 7). Eustache et al (2013) identified that the preservation of self is modulated by change around and within the person. Sabat, Napolitano and Fath (2004) suggest the self, composed and recreated in the narrative of others can support the person. A review of the literature by Caddell and Claire (2010) concluded that aspects of the self may fade as the condition progresses. However from the evidence of this study the self remains at this stage of dementia. 6.5 Recommendations and Considerations Having discussed the four assertions derived from this study, I now turn to the recommendations for future research, practice and education where I also identify some considerations in relation to policy. 6.5.1 Research Instrumental case study in this study has proved to be a useful way of deepening understanding of this concept of quality of life affecting the person with severe dementia and could be extended to other topics. Derived from
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this study this may include the grief and distress found in some family members. I found that family members identified feelings of grief and loss in this end stage of a long progression of a long, difficult and challenging physical and emotional journey, reflected in the work of Blandin and Pepin (2015). The grief expressed was palpable in some cases, such as Mr Walker who felt his wife was a “vegetable”, indicating the sense of loss of the person, yet he considered that she was still his wife and mother of his family, while Mrs Flower’s daughter gave her mother a relatively rich inner life, despite knowing that her mother was severely cognitively impaired. A review by Lloyd, Patterson and Muers (2014) identified that there is more known about the spouse carer and little about the adult child while those few studies available found subtle differences between different groups of carers. Further investigation of this experience of carers using case study method could illuminate this process and indicate future interventions. Further topics for study include to the emotional connections between staff members and the person with severe dementia. In this study some had deep emotional connections, such as between Mr Walker and Mrs Musician and their staff members. As this study has focussed on the person with severe dementia who has family visitors who could support the narrative of their life and maintain connections, then a study involving residents who have no family members to visit could extend this work. Some aspects of quality of life illuminated by this study were not investigated in depth, yet generated interest as they affected quality of life, these included the concept of spirituality in severe dementia (FAST 7). Additionally connections with other residents, which were considered minimal, could be more fully explored. The use of single case studies could also be considered where the person is considered to have some unique features in their person or setting. These studies could deepen understanding of the person who has a singular presentation of dementia or has a particular response to their experiences, as explored in a the case study of a person with frontal lobe dementia and serious distress (Koehn, Kozak and Drance, 2011). While research in care home settings is increasing, most of these are intervention studies and focus on a single approach such as music (Ray and
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Mittelman, 2015), pain management (Husebo, Ballard and Aarsland, 2011) or therapies such as cognitive stimulation (Woods et al, 2012). While these studies have value and may contribute to or influence quality of life for the person with dementia, most are not able to show continued impact over time (Kenigsberg et al, 2015). Rather than these single interventions, I contend the focus should begin with the fundamentals of care; that is personal care, eating and drinking, which occupy most of the person’s day. It is recognised that the care system can contribute to unwelcome care and a systematic and coherent approach is needed (Kenigsberg et al, 2015). Research should include devising and developing strategies in making fundamental care welcome and comforting. A recent international survey of research priorities within care homes (Morley et al, 2014), identified dementia care as a priority and quality of life appeared at number eight of the topics identified, yet only nutrition figured in this list in relation to fundamentals of care. 6.5.2 Practice and Education It has been evidenced in this study that quality of life in severe dementia is profoundly connected to the physical body of the person who is fragile, dependent and vulnerable. This demands respect, collaboration, knowledge, skill, and understanding of this stage not only related directly to the person but all others who contribute or could contribute to care that might influence quality of life. Practice and education are be inextricably linked and therefore these will be interwoven in this discussion. There are key topics identified from this study, firstly that of the need for fundamental care of the body to be prioritised. Secondly, that a sensory focus is needed to improve meaningful engagement. Thirdly, that optimising interpersonal relations within the context of care can enhance quality of life. Fundamental care should be developed as a therapeutic intervention by exploring innovative approaches to make personal care welcome to the person, such as using ways to cleanse the skin with minimal intervention (Barrisk et al, 2002). There are few learning programmes focused on the fundamental aspects of care. As research studies of embodiment (Kontos, 2012) become articulated into practice, this could inform new ways to carry
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out fundamental care, recognising the importance of the body, the senses and understanding implicit memory. Kontos (2012) suggests that nonverbal responses are usually perceived in terms of emotion or pain rather than an expression of personal preferences and that teaching staff about embodied responses could reduce the experience of unwelcome care. Having some understanding of the principles of embodied selfhood might be a useful addition to the knowledge of staff and family members and could influence care and practice (Phinney and Chesla, 2002). Educational stategies that reflect the experience of care, such as using simulation, could increase understanding and empathy, reducing the experience of unwelcome care for the person (Kitwood, 1997; Talbot and Brewer, 2015). In a review of learning programmes for healthcare staff, education theory was most effective when linked with practice learning (Alushi, Hammond and Wood, 2015). The senses proved a key aspect of this study. Kenigsberg et al (2015) reinforce the need to identify interventions with more than a transient impact and this could be addressed by developing a sensory surround, optimizing sensory-based opportunities to include all aspects of the person’s life. Meaningful activity could be introduced by using possessions and objects usually kept in bedrooms as aids to develop engagement. Similar to Fleming et al’s (2015) use of a ‘dying box’ of objects important to the person at the end of life, a ‘life box’ could introduce objects that create a more meaningful sensory stimulating environment when the person is out of his or her bedroom. Using these care activities should be an opportunity to explore connection and engagement with the person. Sensory approaches such as Namaste multisensory care could be facilitated to increase staff awareness of the impact of using the senses (Stacpoole et al, 2014). A sensory approach has already been used successfully in enhancing the eating and drinking experience for the person with advanced dementia (Queen’s Nursing Institute Scotland, 2015). One recent pilot study explored a successful sensory-based day service for the person with advanced dementia who was no longer able to attend usual day services (Tolson et al, 2015). As a result of these policy changes there has been a concomitant escalation in the number of educational material and training courses. While this is a
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positive change, there is a dearth of material that addresses this stage of dementia and in many documents referred to only briefly. Only one study reported that advanced dementia was specifically included in a US learning programme (Jefferson et al, 2012). Across Europe in a survey of dementia content in medical education, this ranged from three hours in Turkey to thirty hours in Sweden (Tsolaki et al 2010). Unsurprising, as Sandvide et al (2015) suggest it is unlikely that this stage of dementia will be emphasised in education when there is so little research. Additionally negative attitudes continued to be reported in surveys about working with this group of people (Kydd et al, 2014). Despite the plethora of learning materials about dementia currently available in Scotland, driven by NHS Education Scotland and The Scottish Social Services Council, there are no specific programmes of study about advanced or severe dementia. One exception is the recent work by Professor Tolson at the University of the West of Scotland on a European project called ‘Palliare’, which is one of the first to develop learning materials specifically for care in advanced dementia. Providing support for the nurses of the future must be considered key to improving care experiences for the person with severe dementia and integration of learning about the entire journey must be included. Most pre registration professional programmes have paid scant attention to the person with dementia (Pulsford, Hope and Thompson, 2007) and severe dementia is largely ignored. A survey by Baillie et al (2015) found only half of third year student nurses are ‘generally confident’ about caring for the older person with dementia and more support is needed as students often report feeling unsure how to respond to people with dementia (Robinson and Cubit, 2007). This is compounded by the lack of reflective and explicit knowledge that may be seen in practitioners such as those in Parahoo et al's (2005) study. Here nurses used implicit memory and priming to approach daily care for the person with dementia using experience and intuition, yet were unable to explain how or why they did so. Interpersonal relations were the lynchpin of the experience of the person with severe dementia (FAST 7), in this study. Staff and family members were successful in care and connection at times and sharing these could maximize
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understanding by building on experiential knowledge, reflecting on practice and learning collaboratively (Eggers, Ekman and Norberg, 2013). Optimising relationship focussed care in the care home could support family, staff and the person in building a narrative that includes the past but continues the story of the person after coming to live in the home and could build on the person’s sense of being at home (Nolan et al, 2006). In this study family and staff members intuitively tried to do this, but Batra et al (2015) suggest that family and staff need training to support narrative self-identity in people with advanced dementia. While the study was not intended as an intervention, the interviews proved deeply reflective for family and staff. In some instances these generated new ways of thinking. It is possible that helping people to identify what they do well and share successes might further develop learning in this area as learning through intense daily interaction cannot be underestimated (Namazi and Johnson, 1996). Therefore an appreciative enquiry approach, based on social constructionism and an appreciation of what the person already knows, could underpin learning by making change within some of the social processes already in place (Cooperider, Whitney and Stavros, 2008; Smith et al, 2010). In addition the current move to include the views of family in educational programmes (Tullo and Gordon, 2013) could be further developed by learning programmes developed for integrated groups that include both family and practitioners. Bringing together care models and care activities specific to this stage of dementia could enhance the person’s quality of care and influence some aspects of quality of life. Collaborative and integrated education for staff and family could address many of the key issues about noting and sharing information and retaining and building the narrative about the person, making assessment and care practice more individualised and nuanced. 6.5.3 Policy Considerations The policy agenda is vital to the practice of care and quality of life and the person with severe dementia, therefore two aspects are addressed here, the first is the lack of attention to this stage of dementia in Scottish Government
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policy and secondly the expressed aim to maintain the person with dementia at home for as long as possible. While Scotland leads the world in developing policy about dementia, with a third dementia strategy about to be published, the first two of these strategies had little content specific to advanced dementia (Scottish Government, 2010, 2013-2016). It is hoped that this new strategy will include a greater emphasis on the advanced stage of dementia, with the recently published Advanced Dementia Practice Model highlighting what might be possible (Alzheimer Scotland, 2015). This model introduces support for the person with advanced dementia, families and supporters including the development of a dedicated specialist. However this model still has insufficient emphasis on people living in care homes and the role of the staff in daily contact. A key intention of the model is the development of therapeutic approaches to facilitate communication and meaningful activity but is perhaps less explicit and inclusive in aspects of fundamental needs, including personal care, eating and drinking. It is essential to emphasise the increasing need for support in all activities to enhance the person’s quality of life in this severe stage. Future care may continue to be provided in a care home but this may change to care at home for the person with severe dementia. It is reported that the impact of slowing the progression of dementia by the introduction of new treatments would bring a saving of nearly £1 million for the UK, but this report implies that even more important is the positive impact on quality of life for the person who is able to remain at home for longer rather than move to a care home (Knapp et al, 2014). Currently remaining at home is not a universal option for people at this severe stage and many have little choice but transition to care homes. Care homes have been alluded to as both the solution and the problem for care of vulnerable people (Goodman et al, 2015).
A study by Tolson et al (2013), found that in many countries
institutionalisation was the default position rather than a positive choice. They may be perceived as solution to care, when it is not possible to be at home and not appropriate to be in hospital. However this solution becomes a problem where the experience is not optimum and the result is poor
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outcomes, not least of which is quality of life. The current integration agenda intends that people will receive the care they need in the right setting, with a focus on preventative care and remaining in the community (Audit Scotland, 2015). The care home is still considered to be a ‘Cinderella’ service (British Geriatrics Society, 2011) and many homes focus on a social model, where the person with severe dementia and complex health care needs may be disadvantaged. Goodman et al’s (2015) survey of care home providers and residents identified that the health rights of people with dementia in care homes are a moral imperative rather than being subject to rights in the political sense and identifies that the person in a care home should have the same rights as the person living at home. In focussing on quality of life within the care home context and seeking deeper understanding this may also assist in the future considerations of care provided in alternative settings and at home. 6.6 Conclusion Since I began this study there has been an escalating interest in dementia, driven initially by the reported impact of the rising numbers of people being diagnosed and in no small part by the involvement of people who have dementia in the earlier stages of the condition. The ideal of living well with dementia is beginning to be part of everyday language about dementia, however this has not yet been integrated into the narrative around severe dementia. Therefore this exploration of the experience and perceptions of quality of life of the person with severe dementia living in a care home has made a contribution to developing a refocused narrative about this stage of the condition. A contribution of this study has been to reveal that the experience, perceptions and factors that influence quality of life change may continue to be discerned in the person with severe dementia (FAST 7). My findings and assertions illuminate quality of life in severe dementia as profoundly connected to the physical body of a person who is fragile, dependent and vulnerable. This demands respect, collaboration, knowledge, skill, and understanding of this stage of dementia not only related directly to the person but all others who contribute or could contribute to care that
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might enhance quality of life. I am optimistic that enhanced quality of life is possible by focussing on the fundamentals of life and care, identified here as respect for the person’s body, responsiveness, narrative and relations within the context in which they live.
A framework of relationship focussed,
sensory-based practice focussing on the fundamentals of daily life is the direction I advocate for practice, education and research. The evidence from this study suggests that this is a singular period in the life of the person with dementia and that aspects of quality of life can be discerned during this time Kitwood presciently identified a danger in romanticising the journey of dementia at the expense of the pragmatic view of the inevitable deterioration in health for the person who survives to the severe stage. He foresaw a difficult path to be navigated between the “Scylla of unfounded optimism and the Charybdis of unjustified despair” (Kitwood, 1995:133). I set out in this chapter to maintain a balance between these rocks. I hope to have avoided ‘unjustified despair’ but recognise that for some family members in particular there is a sense of despair at this stage of dementia where more work needs to be done that is beyond the scope of this study. Despite this I believe that I have identified aspects of quality of life in severe dementia that could be termed justifiably optimistic. This is partly based on the efforts of family and staff to maintain quality of life for the person and the person’s own determination to maintain their agency. This focus on quality of life can both enhance respect for the person and support the need for enhancements in practice, education, policy and research. Without engaging with the key players in the life of the person with severe dementia there can be no influence on the systems that can make change. Personally, as a researcher and a nurse my experience and the findings from this study has increased my respect for the person with severe dementia (FAST 7). Even in extremis, the resilience of such vulnerable human beings is remarkable and supported by their own actions and responses as well as the efforts of the people around them. The person with dementia should expect quality of life as a focus throughout their experience of dementia and I wish to continue to contribute to this.
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Appendices Ethical Approval Letters
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Appendix 2 Permission to Access Care Home from Managers
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Appendix 3 Rating Scales
Functional Assessment Staging of Alzheimer’s Disease scale (Staging) Confusion Assessment Method (Delirium). Barthel Index (Activities of Living) Abbey Pain Scale (Pain) Neuropsychiatric Inventory: Nursing Home version (Neuropsychiatric sequelae).
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Functional Assessment Staging of Alzheimer’s Disease scale (Staging)
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Confusion Assessment Method (Delirium).
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Appendix 4 Information for Care Home Newsletter
I would like to introduce myself to you. My name is Margaret Brown and I am a lecturer in nursing at the new University of the West of Scotland in Hamilton. I am currently studying for an advanced degree and this involves carrying out some research. My real interest is nursing people who have had dementia for some time and need a good deal of care. I would very much like to study the issue of quality of life for people in this situation. The managers here at Morningside have very kindly allowed me the opportunity of carrying out the study here in the home and I am delighted as I know how high a standard they have achieved in their care here. I am hoping to have the opportunity to speak to some of you in the near future about my study and would like to thank Sheena and Ann again for this opportunity
Mrs. Margaret M Brown RMN, Dip.N, BA(hons), MSc, PGCertTLHE.
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Appendix 5 Information Leaflet
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Appendix 6 Letter and Information for General Practitioners
Date
Re Proposed research: Quality of Life in Severe Dementia Dear Dr…………… Please find enclosed a copy of an information sheet regarding the above research. Please do not hesitate to contact me should you wish to discuss any aspect of the research further. Yours faithfully Mrs. Margaret M Brown RMN, DipN, BA(hons), MSc, PGCertTLHE.
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Information for General Practitioners Proposed research: Quality of Life in Severe Dementia This research study is being undertaken for the award of PhD in nursing, and is supported by the University of the West of Scotland. It is proposed to carry this research out within the dementia unit of Morningside Care Home. The researcher is a very experienced nurse in the field of dementia care and has a variety of research and teaching experience and qualifications. I have attached my CV for your information. The study will explore the issue of quality of life for the person with severe dementia living in a care home environment. The person who is in this severe stage of dementia is unlikely to be able to perform any activity of daily living independently and will have limited or no verbal communication. Knowledge about quality of life in this group is sparse and difficult to elicit from the person who has such a degree of impairment. This study will focus on broad statements of purpose as follows:
How might quality of life be discerned in the person with severe dementia?
To explore the behaviours, reactions and responses of the person with severe dementia during periods of observation
To investigate the knowledge and understanding of caregivers, family and loved ones of quality of life in the person with severe dementia
This study will use the conceptual framework of an exploratory, multiple case study to support the method. It is the intention of this research to explore up to six case studies of people with dementia living in this care home. Data collection will include direct observation of the person with severe dementia, interviews with family members, care staff and an examination of the artefacts concerned in their care. These will include their personal plans of care held within the care home and their environment of care. The main ethical issues here are the vulnerability and incapacity of the respondents. The researcher has endeavoured to address this by ensuring that data gathered directly from them is noninvasive and involves observation and the collection of collateral reports and documents. Every effort will also be made to ensure all consent gained from other respondents on their behalf adheres to the guidance of the Adults with Incapacity (Scotland) Act (2000).
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I would be most grateful if you could assist me in this study by discussing the following with me.
The capacity of the residents whose Guardian, Welfare Attorney or nearest relative have agreed to their involvement.
If you are aware of any wishes they previously expressed about involvement in research.
Any factors, including medication, in their physical and mental health that may have an effect on my observations.
If you wish to discuss this further or require any further information please do not hesitate to contact me on Telephone 01698 283100 ext 8473 Email
[email protected]
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Appendix 7 Invitation, Information and Consent Form for Guardian, Welfare Attorney or nearest relative (All information and consent forms were provided In size 14pt font and 1.5 spacing to enhance readability) Quality of Life in Dementia Invitation to Guardian, Welfare Attorney or nearest relative to discuss the involvement of their relative/friend in a research study exploring quality of life for people with severe dementia living in a care home. I would like to introduce myself. My name is Margaret Brown and I am a lecturer in nursing at the University of the West of Scotland. I am carrying out a research study here in the care home. I would like to ask you to consider allowing your relative/friend to be involved in my research study. Before you decide if you would like to help me, I would like to explain why I am doing the research and what it would involve for your relative/friend. I am researching quality of life for people who are severely affected by dementia and are no longer able to talk clearly about their experience. This is something that has not been examined very closely and I feel strongly that it should be explored to try and make life better for the person. As your relative/friend is not able let me know if they wish to be involved in this research study, I am asking your opinion about whether you think they would wish to be part of this. I am happy to go through an information sheet about the research with you and answer any questions you may have. This would take about 30 minutes. If you would like to discuss the research with me please reply using the return slip and envelope provided. Thank you for taking the time to read this letter Yours sincerely Mrs Margaret M Brown
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Title of Project: Quality of Life in Severe Dementia Information sheet: Guardian, Welfare Attorney or nearest relative of the person with dementia Your relative/friend is not able to decide whether to participate in this research study. To help decide if he/she should join the study, I would like to ask your opinion whether or not they would wish to be involved. Please consider what you know of their wishes and feelings about research and to consider how they might feel about this study. Please let me know of any advance decisions they may have made about participating in research. If you decide that your relative/friend would have no objection to taking part I would ask you to sign the consultee declaration form. I will give you a copy of this to keep. I will keep you fully informed during the study and you can let me know of any concerns about your relative/friend’s experience of the research. You can withdraw them from the study at any time. If you decide that your relative/friend would not wish to take part it will not affect any of the care they currently receive. The following information is the same as I would have provided for your relative/friend if they were able to give me consent to be involved. This information sheet is intended to help you decide if you wish to allow your relative/friend to be involved in this study. I will go through this with you in order to discuss any issues or concerns and explain any aspect that is not clear. This discussion may take around 30 minutes. Who am I? My name is Margaret Brown. I am a lecturer in nursing at the University of the West of Scotland. I am currently doing a research study to explore the quality of life for people with severe dementia living in care homes. I am being supervised in my work by Dr Angela Kydd and my director of studies is Professor Craig White who both works in the same university. What is the purpose of the research? The research is intended to explore and understand how people with severe dementia experience quality of life. It will help me to develop a method to assist staff in care homes to understand the person with severe dementia’s needs more clearly. Why have you been invited to become involved?
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The senior nurses here in the care home have said that you are the Guardian/ Welfare Attorney/ nearest relative of your relative /friend and that you are the person who is able to agree that they may be included in this study. What information will be gathered about my relative/friend? The research involves gathering a variety of different information about your relative/friend. I would like to spend short periods observing your relative/friend during the daytime. I would be observing him or her for a one hour period each day over a total of three days. I would be seated a short distance away from them and would not approach them during these periods. I would record their behaviour and reactions to what is going on around them during this time. I would also like to read their personal plans of care kept here in the care home and ask their General Practitioner for information about the medication they are taking. I will not ask about their personal medical information but would ask the General Practitioner to identify any health problem that may prevent me from observing them safely. In addition I would like to interview a close family member or friend and a member of the care staff here about them. The information I would ask from the close family member or friend would involve questions about the person’s life before they came into the care home and their life here up to the present day. From the care home staff member I would ask about the daily life of the person here in the home. With your permission, the interviews will be tape recorded and then what has been said will be written down. This will allow me to study the information they have given and develop a more careful and detailed understanding of what we have discussed. Are there any risks involved? You relative/friend may be unwilling to be observed and if so their involvement in the study will not continue. This will not affect the standard of care provided to your relative/ friend in any way. There may be some aspect of their care and treatment that may cause me concern and if this happens I will bring it to the attention of the General Practitioner and the care home managers. Are there any benefits? I cannot promise that the research will directly help you or your friend/ relative. However the information I hope to gather from the research may help improve the care of people with dementia in the future. The information will be used to develop a method to assist staff in care homes to understand the person with dementia’s needs more
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clearly. The information may also be used to teach staff in care homes about the care of the person with severe dementia What if you are unhappy about any aspect of the research? If you have any complaint about the way you have been dealt with in the course of the research this will be addressed by the representative of the University of the West of Scotland, Professor John Atkinson. What will happen to the information about your relative/ friend? The information will be used to develop the improved method of caring for the person with dementia. All personal information will be kept confidential. The people who take part in this study will not be identified by name on any of the material. The material may be seen by responsible people from the University of the West of Scotland. All the research information will be kept in a secure, locked environment in the university. All the tapes and written material will be kept for five years and then can be returned to you or I can arrange to have them disposed of. No information regarding your relative/ friend from the care home, such as personal care plans will be removed from the home or copied. What will happen to the results of the research? I am carrying out this research for a Doctor of Philosophy Degree at the University of the West of Scotland. I will produce a research report and papers that may be published in professional journals. When the study is finished I will write to you and let you know what I have found out in the research. Who has given permission for this research? The University of the West of Scotland has given permission. The Research Ethics Committee for Adults without Capacity has examined this proposal and given permission. The managers and General Practitioners of the care home have also given permission. What if you need more information? If you need any further information please contact me by telephone at 01698 283100 ext 8473 or email me on
[email protected] Thank you for taking the time to read this information sheet.
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Consent form (Guardian, Welfare Attorney or nearest relative) Title of Project: Quality of Life in Severe Dementia Name of Researcher: Mrs. Margaret M Brown Please initial the box 1) I confirm that I have read and understand the information sheet dated 10/05/2010: Version two, about the above study. I have been given the opportunity to consider the information, ask questions and have had these questions answered to my satisfaction. 2) I understand that I have agreed to the voluntary participation of my relative/friend in the research and that I am free to withdraw their involvement from the study at any time. I do not need to give a reason for this and the care of my relative/friend will not be affected if I do so. 3) I understand that appropriate parts of the material collected for the research may be looked at by responsible individuals from the University of the West of Scotland and I give permission for these individuals to look at this material. The published study will not identify individuals who take part 4) I agree to my relative/ friend taking part in the study. 5) I am the Welfare Guardian for___________________________ Or There is no Welfare Guardian appointed; I am the nearest relative of ______________________ -------------------------------------Name of Welfare Guardian Or nearest relative
---------------- ---------------------------Date Signature
---------------------------------------------------- --------------------------Name of researcher taking consent Date Signature One copy of this form will be retained by the consultee and one by the researcher
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Appendix 8 Invitation, Information and consent for family participants
Quality of Life in Dementia Invitation to the relative/ friend to participate in a research study exploring quality of life for people with severe dementia living in a care home. I would like to introduce myself. My name is Margaret Brown and I am a lecturer in nursing at the University of the West of Scotland. I am carrying out a research study here in the care home. I would like to ask you to consider taking part in my research study. Before you decide if you would like to help me, I would like to explain why I am doing the research and what it would involve for you. I am researching quality of life for the people who are severely affected by dementia and are no longer able to talk clearly about their experience. This is something that has not been examined very closely and I feel strongly that it should be explored to try and make life better for the person who has dementia I would very much like to talk to close family members of some of the people living here in the care home. I am happy to go through an information sheet about the research with you and answer any questions you may have. This would take about 30 minutes. If you would like to discuss the research with me please reply using the return slip and envelope provided. Thank you for taking the time to read this letter Yours sincerely Mrs Margaret M Brown
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Title of Research Study: Quality of Life in Severe Dementia Information sheet: the relative/ friend of the person with dementia This information sheet is intended to help you decide if you wish to help me with this research study. I will go through this with you in order to discuss any issues or concerns and explain any aspect that is not clear. This discussion may take around 30 minutes. Who am I? My name is Margaret Brown. I am a lecturer in nursing at the University of the West of Scotland. I am currently doing a research study to improve the quality of life for people with severe dementia living in care homes. I am being supervised in my work by Dr Angela Kydd who also works in the same university What is the purpose of the research? The research is intended to explore and understand how people with severe dementia experience quality of life. It will help me to develop a method to assist staff in care homes to understand the needs of the person with severe dementia more clearly. Why have you been invited to take part? The senior nurses here in the care home have said that you may be interested in helping me with this research and you are someone who is involved in the care of a person who has dementia and know that person well. Do you have to get involved? It is up to you to decide whether or not to take part in the research. I will explain the research study and discuss the contents of this information sheet with you. You will have the opportunity to ask questions about all aspects of this. Should you decide to take part then I will ask you to sign a consent form. After this you are still free to withdraw from the study at any time and you do not have to give a reason. This will not affect the standard of care provided to your relative/ friend in any way. What will you have to do if you take part? I will interview you for about 45 minutes on two separate occasions within a three week period. The interview will be held in a private room here in the care home. The interviews will involve questions about your relative/ friend’s life before they came into the care home and their life here up to the present day. If you wish, you may refuse to answer any of the questions during the interview.
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With your permission, the interviews will be tape recorded and then what has been said will be written down. This will allow me to study the information you have given and develop a more careful and detailed understanding of what we have discussed. Are there any risks involved? There may be some issues related to your friend/relative that you may find difficult to talk about. You do not need to discuss anything that you do not wish to. You can also stop the interview at any time. Are there any benefits? I cannot promise that the research will directly help you or your friend/ relative. However the information I hope to gather from the research may help improve the care of people with dementia in the future. The information will be used to develop a method to assist staff in care homes to understand the person with dementia’s needs more clearly. The information may also be used to teach staff in care homes about the care of the person with severe dementia What if you are unhappy about any aspect of the research? If you have any complaint about the way you have been dealt with in the course of the research this will be addressed by the representative of the University of the West of Scotland, Professor John Atkinson. What will happen to the information you give? The information will be used to develop the improved method of caring for the person with dementia. All the information you give me will be kept confidential. Those people who agree to take part will not be identified by name. The material may be seen by responsible individuals from the University of the West of Scotland. All the research information will be kept in a secure, locked environment in the university. All the tapes and written material will be kept for five years and then can be returned to you or I can arrange to have them disposed of. What will happen to the results of the research? I am carrying out this research for a Doctor of Philosophy (PhD) degree at the University of the West of Scotland. I will produce a research report and papers that may be published in professional journals. When the research is finished, with your permission, I will write to you and let you know what I have found out in the research. Who has given permission for this research? The University of the West of Scotland has given permission. The Research Ethics Committee for Adults without Capacity has examined this proposal and given permission. The managers and General Practitioners of the care home have also given permission.
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What if you need more information? If you need any further information please contact me by telephone at 01698 283100 ext 8473 or email me on
[email protected] Thank you for taking the time to read this information sheet.
342
Consent form (for family member or friend ) Title of Project: Name of Researcher:
Quality of Life in Severe Dementia Mrs Margaret M Brown Please initial the box
1) I confirm that I have read and understand the information sheet dated 10/05/10: Version Two, about the above study. I have been given the opportunity to consider the information, ask questions and have had these questions answered to my satisfaction. 4) I understand that I am a voluntary participant in the research and that I am free to withdraw from the study at any time. I do not need to give a reason for this and the care of my relative/friend will not be affected if I do so. 5) I understand that appropriate parts of the material collected for the research may be looked at by responsible individuals from The University of the West of Scotland and I give permission for these individuals to look at this material. The published study will not identify individuals who take part 6) I agree to take part in the study.
-------------------------------------Name of participant
---------------- ---------------------------Date Signature
---------------------------------------------------- --------------------------Name of researcher taking consent Date Signature One copy of this form will be retained by the consultee and one by the researcher
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Appendix 9 Information and consent for staff
Quality of Life in Dementia Invitation to care staff to participate in a research study exploring quality of life for people with severe dementia living in a care home. I would like to introduce myself. My name is Margaret Brown and I am a lecturer in nursing at the University of the West of Scotland. I am carrying out a research study here in the care home. I would like to ask you to consider taking part in my research study. Before you decide if you would like to help me, I would like to explain why I am doing the research and what it would involve for you. I am researching quality of life for people who are severely affected by dementia and are no longer able to talk clearly about their experience. This is something that has not been examined very closely in the past and I feel strongly that it should be explored to try and make life better for the person who has dementia I would very much like to talk to staff who work closely with some of the people living here in the care home. I am happy to go through an information sheet about the research with you and answer any questions you may have. This would take about 30 minutes. If you would like to discuss the research with me please reply using the return slip and envelope provided. Thank you for taking the time to read this letter Yours sincerely Mrs Margaret M Brown
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Title of Project: Quality of Life in Severe Dementia This information sheet is intended to help you decide if you wish to help me with this research study. I will go through this with you in order to discuss any issues or concerns and explain any aspect that is not clear. This discussion may take around 30 minutes. Who am I? My name is Margaret Brown. I am a lecturer in nursing at the University of the West of Scotland. I am currently doing a research study to improve the quality of life for people with severe dementia living in care homes. I am being supervised in my work by Dr Angela Kydd who also works in the same university What is the purpose of the research? The research is intended to explore and understand how people with severe dementia experience quality of life. It will help me to develop a method to assist staff in care homes to understand the person with dementia’s needs more clearly. Why have you been invited to take part? The senior nurses here in the care home have said that you are someone who is involved in the care of a person who has dementia and know that person well. Do you have to get involved? It is up to you to decide whether or not to take part in the research. I will explain the research study and discuss the contents of this information sheet with you. Should you decide to take part then I will ask you to sign a consent form. After this you are still free to withdraw from the study at any time and you do not have to give a reason. This will not affect your work here in any way. What will you have to do if you take part? I will interview you for about 45 minutes on two separate occasions within a three week period. The interview will be held in a private room here in the care home. The interview will be about the daily life of the person in the home with severe dementia that you care for regularly. If you wish, you may refuse to answer any of the questions during the interview. With your permission, the interviews will be tape recorded and then what has been said is written down. This will allow me to study the information you have given and develop a more careful and detailed understanding of what we have discussed. Are there any risks involved? There may be some issues related to the person with dementia that you may find difficult to talk about. You do not need to discuss anything that you do not wish to. You can also stop the interview at any time.
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Are there any benefits? I cannot promise that the research will directly help you or the person you are caring for. However the information I hope to gather from the research may help improve the care of people with dementia in the future. The information will be used to develop a method to assist staff in care homes to understand the person with dementia’s needs more clearly. The information may also be used to teach staff in care homes about the care of the person with severe dementia What if you are unhappy about any aspect of the research? If you have any complaint about the way you have been dealt with in the course of the research this will be addressed by the representative of the University of the West of Scotland, Professor John Atkinson. What will happen to the information you give? The information will be used to develop the improved method of caring for the person with dementia. All the information you give me will be kept confidential. Those people who agree to take part will not be identified by name. The material may be seen by responsible individuals from the University of the West of Scotland. All the research information will be kept in a secure, locked environment in the university. All the tapes and written material will be kept for five years and then can be returned to you or I can arrange to have them disposed of. What will happen to the results of the study? I am carrying out this research for a Doctor of Philosophy Degree at the University of the West of Scotland. I will produce a research report and papers that may be published in professional journals. When the study is finished I will write to you and let you know what I have found out in the research Who has given permission for this research? The University of the West of Scotland has given permission. The Research Ethics Committee for Adults without Capacity has examined this proposal and given permission. The managers and General Practitioners of the care home have also given permission. What if you need more information? If you need any further information please contact me by telephone at 01698 283100 ext 8473 or email me on
[email protected] Thank you for taking the time to read this information sheet.
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Consent form (for the care home staff member ) Title of Project: Name of Researcher:
Quality of Life in Severe Dementia Mrs Margaret M Brown Please initial the box
1) I confirm that I have read and understand the information sheet dated 10/05/10: Version two, about the above study. I have been given the opportunity to consider the information, ask questions and have had these questions answered to my satisfaction. 2) I understand that I am a voluntary participant in the research and that I am free to withdraw from the study at any time. I do not need to give a reason for this and my work will not be affected if I do so. 3) I understand that appropriate parts of the material collected for the research may be looked at by responsible individuals from The University of the West of Scotland and I give permission for these individuals to look at this material. . The published study will not identify individuals who take part 4) I agree to take part in the study.
-------------------------------------Name of participant
---------------- ---------------------------Date Signature
---------------------------------------------------- --------------------------Name of researcher taking consent Date Signature One copy of this form will be retained by the consultee and one by the researcher
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Appendix 10 Interview schedules for family and staff participants INTERVIEW SCHEDULE Relative or friend
Participant identifier eg 1F________________________ Date_________________ Time start_______________
finish__________________
Setting____________________________ Relationship to the person with dementia_______________________ Length of time known to them_____________________________ Welfare attorney
yes no (circle)
Guardian yes no (circle) Nearest relative yes no (circle)
1) Introductory, descriptive questions How long has your family member/ friend lived here in this home? Can you tell me how long you have known him/her? Do you have a long journey here to visit him/her? How often do you manage up to visit? 2) Information gathering questions What did your family member/friend do before they retired? What was their usual routine after they retired?
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What kind of activities did he/she like to do? Were there experiences that he/she particularly liked? Were there experiences that he/she did not like? Could you tell me your family member/friends three favourite things? 3) Exploring feelings and reactions. Were there things he/she really disliked? What were three things that could make them upset or angry? What were three things that could make them happy? 4) Questions related to the experience of dementia before entering the Care Home When your family member/ friend first found out they had dementia. Can you describe what they enjoyed at that time? Can you describe what they did not enjoy at that time? As the condition got worse can you describe any changes in what they enjoyed? As the condition got worse can you describe any changes in what they did not enjoy? When they came into the home here when did they appear happy? When they came into the home here when did they appear unhappy? 5) Questions related to their current condition of severe dementia When you visit now, is there a way you can tell how he/she is feeling? Can you describe what your family member/friend does when they are happy? Can you describe what your family member/friend does when they are unhappy? Do you support them in any of their daily care? ( If yes) How do they respond when you support them to (insert here any of the daily activities they support the person with? Is there anything else you think I need to know? Field notes:
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INTERVIEW SCHEDULE Care home staff member
Participant identifier
eg 1C__________________
Date_________ Time
start ___________ finish_________________
Setting ________________________________ Job title________________________________ Level or type of training__________________________________________ Length of time in a caregiving role _________________________________ Length of time in this care home____________________________________ Length of time caring for this person with dementia_____________________
1) Introductory, descriptive questions How long have you known Mr/Mrs X? How many days a week do you provide care for him/her? What different kind of care do you provide? 2) Information gathering questions What do you know of Mr/Mrs X’s routine before they came into the home? What was their routine here when they came in at first? How well were they when they came here to stay? 3) Exploring feelings and reactions. When they came into the home here, when did they appear comfortable? When they came into the home here, when did they appear uncomfortable?
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Were there things he/she really disliked? What were three things that could make them upset or angry? What were three things that could make them happy? 5) Questions related to their current condition of severe dementia Is there a way you can tell how he/she is feeling? Can you describe what he/she does when they are happy? Can you describe what he/she does when they are unhappy? How do they respond when you are supporting them to eat and drink? How do they respond when you are supporting them to wash and bathe? How do they respond when you are supporting them to go to the toilet? How do they respond when you are supporting them to dress and change? How do they respond when you are talking to them? Is there anything else you think I need to know? Field Notes
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Appendix 11 Extracts from Case Study Five: Mrs Musician This section includes the following:
1) The elaborative codes and findings from case study five: Mrs Musician. 2) A Day in the Life: Mrs Musician. 3) Extract from movement record and charts and field notes. 4) Extract from of the first level of analysis using Lawton’s framework. 5) Extract from the second level of analysis, elaborative coding.
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1) The elaborative codes and findings from case study five: Mrs Musician
Elaborative codes Do you want to prolong it? Her condition is deteriorating Don’t disturb her In her own wee world A breakthrough moment Take it as it comes We keep her nice An eager eater One of the family An aesthetic lady Music is key Leaning in for a kiss
Key findings Clouded by illness: responding to complex needs Living from moment to moment: recognising the person The best we can do: keeping connected Responding to the senses: changing needs
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2) A Day in the Life: Mrs Musician Day of the Week: Tuesday Date: 17/06/14 Date 7.00 am 7.30 am 8.00 am 8.30 pm 9.00 am 9.30 am 10.00 am 10.30 am 11.00 am 11.30 am 12.00 md 12.30 pm 1.00 pm 1.30 pm 2.00 pm 2.30 pm 3.00 pm 3.30 pm 4.00 pm 4.30 pm 5.00 pm 5.30 pm 6.00 pm 6.30 pm 7.00 pm 7.30 pm 8.00 pm 8.30 pm 9.00 pm 9.30 pm 10.00 pm 10.30 pm 11.00 pm 11.30 pm 12.00 mn
Where Bed Bed Bed Bed Bed Bed Bed Bed Bed Bed Dayroom Dayroom Dayroom Dayroom Dayroom Dayroom Dayroom Dayroom Dayroom Dayroom Dayroom Room Room/ bed Bed Bed Bed Bed Bed Bed Bed Bed Bed Bed Bed Bed
Activity Sleeping Pressure area care Sleeping Sleeping Medication and juice given, radio on Breakfast, alert and ate well Resting but awake Pressure area care, awake Washed in bed Dressed to get up Up in recliner chair for lunch Lunch taken, ate fairly well, alert Juice and medication, alert Listening to music Listening to music Juice taken well Watching residents beside her Juice taken well Watching residents Dinner taken, alert, watching staff Medication, juice taken Returned to bed, appears sleepy Now asleep Pressure area care, sleeping Juice taken, wakened Final check by day staff. Juice taken Sleeping Sleeping During this period the care is standard by night staff. All residents are checked two hourly for drinks or changing the bed. Pressure area care is also carried out. Staff respond to any sounds at other times.
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3) Extract from movement record and field notes: Mrs Musician Respondent Date Time Setting
Response EYES Open Closed TRUNK Relaxed Restless Jerking/ twitching Tense UPPER LIMBS Relaxed Plucking Twisting Striking Tense LOWER LIMBS Relaxed Restless Kicking Twisting Tense HEAD Upright Tilted forward Tilted back EXPRESSION Smiling Frowning Grimacing None
1m
Mrs M 21st June 2014 From 12.20pm To 12.25pm Sitting/ dining room
2m
3m
x x x
4m
5m
x
1 m. Sitting in recliner chair. Turns her head briefly, then closes her eyes. Music on in the room. Tunes from the wartime period, quite loud.
x
2m Nurse passes close by with another resident and she opens her eyes, looks briefly then look down again.
x
x
x x
x
x x
x
x
Field Notes
x
3m Eyes closed and I wonder if she is asleep, she looks so relaxed. x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
4m Briefly looks around, mouth is moving but no sounds heard. 5m Eyes close again. Her upper body is a little tense now; her arms are folded over her waist. She looks sleepy
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Respondent Date Time Setting
Response EYES Open Closed TRUNK Relaxed Restless Jerking/ twitching Tense UPPER LIMBS Relaxed Plucking Twisting Striking Tense LOWER LIMBS Relaxed Restless Kicking Twisting Tense HEAD Upright Tilted forward Tilted back EXPRESSION Smiling Frowning Grimacing None
Mrs M 21st June 2014 From 12.25pm To 12.30pm Sitting/ dining room
1m
2m
3m
4m
5m
x x x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
Field Notes 1 m. Eyes are closing and only briefly open. She looks as though she is falling asleep and she is trying to stay awake 2m Continues to rest with her eyes closed, no body movements at all. The room is still quiet and rather empty at the moment as the residents are at the toilet or being washed. The room is bright and rather warm 3m Her eyes are closed, little sound to disturb her. The wartime music is still on and fairly loud but she doesn’t seem to be disturbed. 4m Making small fluttery movements with her eyelids but struggling with sleep. 5m Still drowsing with little movement.
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Respondent Date Time Setting
Response EYES Open Closed TRUNK Relaxed Restless Jerking/ twitching Tense UPPER LIMBS Relaxed Plucking Twisting Striking Tense LOWER LIMBS Relaxed Restless Kicking Twisting Tense HEAD Upright Tilted forward Tilted back EXPRESSION Smiling Frowning Grimacing None
1m
Mrs M 21st June 2014 From 12.30pm To 12.35pm Sitting/ dining room
2m
3m x
x
x
x
x
4m
5m
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
x
1 m. Still and drowsy, one nurse is now in and rushing around moving people from the chairs to the table. One male resident is shouting. Music still rather loud. 2m Eyes still closed and not moving despite the increase in ambient noise
x
x
Field Notes
x
x
x
x
3m Opens her eyes and looks around. Her upper body tenses again. People are moving noisily around her now and residents are returning to sit at tables for lunch. 4m Food trolleys pass just behind her and she opens her eyes and adjusts her upper body position. She looks more relaxed now. 5m One staff member is chatting to another behind her chair. She makes no response. There a real noise now of dishes and cutlery being laid on the table. Radio is switched off for lunch (protected mealtimes rules).
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Field Notes: Mrs Musician Data collection method Observation
Date
Time start
Time finish
Setting
21st June
12.20pm
1.50pm
Sitting/dining room
Observational / interview notes: Mrs M. is just out of bed, staff tell me, and has been resting all morning. This is her usual pattern and there are no unusual circumstances that will affect the observation this afternoon. She was fully dressed and has her glasses on. She sits in a recliner chair and looks comfortable. The view between us was good with few people moving between us to interrupt my line of sight. There is approx. 10ft between us. I did not feel intrusive. I made notes at a small table. The nurse was doing the same at a table at the other end of the room. The preparation for lunch happened around me and a number of residents were out of the room initially, they are taken to their bedrooms to be washed or go to the toilet and prepare for lunch. Lunch began with a flurry of activity as people were brought back using wheelchairs and food trolleys appeared, cutlery and crockery placed on tables. Real changes in sound and atmosphere. Lunch was served to the few residents who can sit at the table and eat with minimal assistance. Then staff move around to those who need to be helped with all aspects of eating and drinking. I saw staff attending to people as they finish a course. So it is not always the same person who helps the resident throughout the meal. There was no radio or TV on, as this unit has a protected mealtimes rule, so no visitors and reduced sound. Of course the staff and residents make a noise but that is not really recognised. There is one male resident who was active and did not sit to eat. He can be quite noisy and staff tend to respond to him in the same way, by talking loudly. The room was warm and there is a very strong smell of food when the meal was beginning. The staff say very little to residents in the main with one or two who are more likely to speak to them while they are helping. Staff don’t say much to each other and all seem to know what their role is. Staff spent little time trying to get the person’s attention before they help, for example putting on tabards or wiping the person’s mouth. Very few tell the person what they are going to eat or drink and when they move away and come back there is no warning of this. Residents appear to eat well and take what they are offered. Theoretical notes: Mrs. M seems to look at others when they make a noise and are close to her and wonder what she sees and perceives. There seems to be an awareness of others as Clare suggests but a lack of interest in others in the environment. The main connection seems to be when the staff actively look into her eyes and maintain 358
that while saying her name. Very few try to touch her to gain her attention. I am not sure that there is any real focus in this except to get calories into the residents. There are often fairly loud noises in the sitting room from the television and other residents and she does not seem to react to them at all. I wonder if her hearing is impaired or if she is in that bubble state where only those things immediately around her have an impact on her attention. She does respond to close sound by others but it does not engage her for long. Loud sudden sounds make her jump but only momentarily. Her responses are very subtle but I can see them. Grimacing when her face is wiped and the mm mm sounds when she has eaten something. There is something here that is discernable if rather fleeting. I am not sure how staff could use these as while they must see them. Methodological notes: I have been challenged by Mrs M’s long periods in bed and this was an ideal opportunity to observe her over a sustained period while in the sitting room with other residents. I found that I had fewer breaks today as she was having lunch. This seemed to be a good opportunity to continue observing through the whole lunch period and I didn’t stop at my usual 15 minutes for a rest. I do think this was justified as she is up for such a short time and staff can sometimes just take her back to her room if she looks tired. I thought I might have some loss of concentration but this seemed to be fine today. I am not sure that I would do that in the evening sessions as I am likely to be too tired to maintain focus in the same way. I am finding it relatively easy to block out the other people in the room during the observation periods. I thought this would present more problems than it does. Personal notes: Mrs M is such a frail lady and she seems to be relatively isolated in the dayroom, she almost seems more comfortable in her bedroom with her own music on and fewer sounds in the space around her. However instinctively I wouldn’t like to see her only in the bedroom as I would feel she was lonely, although there is no basis for this except for my feelings about this. I find the staff a bit frustrating at mealtimes. I know they work very hard and try to be careful and are kind in general. However, the process lacks joy and pleasure for anyone and I am sure they see it as a task. Such a shame when food seems to be a pleasure for the majority of the residents. I appreciate that turning off the TV and radio does make the noise level more bearable but can’t help thinking it is rather cold and clinical during these times of day.
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Recorded on Date -21st June 2014: Time 12.25pm: Mrs Musician Plan of sitting/ dining area beginning of the observation period. All the seats fill up during this period.
Male
Empty
Empty
Mrs Musician
Empty
Approximately 10 feet apart Empty
Female
Television
Empty Female
Researcher Table
window
Medicine Trolley
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4) Extract from first level of analysis using Lawton’s framework, showing examples from each of the four dimensions in 8 of 36 pages of data: Mrs Musician Dimension
Domain
Data examples
Notes
1. Behavioural competence
a. Physical health
Daughter Interview 1 I don’t think she’s got much sight now. Oh she, she doesn’t often see. She’s never seen my grandson, she just doesn’t get, she just … see him. He can be right in front of her And it’s not sight, it’s to do with her brain I think. Oh she, she’s got glaucoma. Yeah. She’s got glaucoma and I do think she’s probably got tunnel vision you know. I feel she sees further away better to be honest. Like she often catches me at the bottom of the bed more than she does close up Had a bad spell over Christmas where she was really sleeping most of the time, like you saw her and I just find that really awful going in to her being like that and she’s well cared for, she’s not in pain. He (Dr) thinks she had a series of TIAs. Well last August she had a major one I found that really hard though because I mean she lay, you would say dying, for 3 or 4 days, there was nothing, she wasn’t eating; she wasn’t drinking. Well I would say it’s now more on a physical rather than mental if you know what I mean. If I go in and her eyes are alert and I … I think she's feeling well But if I go in and her eyes are, you know, all over the place or she's away to one side, then I don’t think she’s as well but that can vary within a visit. I don’t know what happens at the end of Alzheimer’s, you know this is new to me and you know, how, the stage mum’s at, do you want to prolong it for her by giving
Her vision is impaired and she has not only eye disease but post stroke vision problems and possible a degree of psychic blindness. She sees people better when they are right in front of her and not too close She has recovered more than anyone expected from this period and is in a between place, not fully palliative in the staff’s eyes but still frail and ill. Her physical state varies considerably and she can go from a physically unwell state to one that is alert and responsive within a short period. Her daughter wants her to be responsive when she visits and is disappointed when she is not reacting to her, while accepting that this is
Staff Interview 1
Coding Poor vision Deteriorating health
Palliative care Pain management Unexpected recovery In between place I want her to respond
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Aye, so now she’s mostly on bed rest now. I think her condition’s deteriorated. We knew by her facial expression and her body language she was in pain. Rather than her mental state, her body is becoming frail. Now she’s having more days in bed. Used to be we got her up every day for a couple of hours then it’s went on to every second day. No I don’t think it is just getting a position. I would say it’s more discomfort than pain.
mum’s deteriorating health
Rating Scales Barthel Index 0/100 Abbey pain scale 7/18 chronic
All agree that her hearing continues to be acute and that she hears voices of those speaking to her. She is more likely to hear loud voices near her and male voices, which are lower in tone. However ambient noise does not seem to be noticed. Perhaps she is too used to the ambient sounds of the home. Loud sounds close to her make her jump and she shows a marked startle response to doors being banged or something being dropped but not shouting of other residents. She was also very sensitive to touch and rain, wind and the shower all troubled her and she reacted to these.
Care notes Medication for pain (including morphine) anaemia, glaucoma She has both glaucoma and cataracts and suspected post stroke visual problems Does speak only yes or no use her facial expressions or gestures to understand her communication Her skin is intact but high risk of pressure sores History of a fractured femur Weight is relatively stable Notes say she has pain mobilising all attributed to previous fractured femur. Notes refer to generalised pain Observation Has regular myoclonic type jerks She can lift her head and move her arm. She moves more freely in bed than in the chair. Daughter Interview . 2
She spends most of the time in bed now with only short periods in the sitting room.
Chronic pain Variable state Avoid distress
Mainly bedbound
Can hear voices
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When she was young, if you walked past her and bumped her she would jump. She’s not got a very, she never had a high pain threshold. She was very, very sensitive always. Cold hands are just a nightmare. Yeah, it’s as if her nerve ends are just, you know I don’t know. And really … got to go for the best scenario at the time and that’s been my attitude throughout. I’ve fought for the best scenario for both mum and dad and I think being pain free at the moment is maybe best for mum although we maybe don’t get as much of mum as we might do. And it does go through my mind, like today I had no response at all today. She was lying out of it somewhere else and I think what’s the point you know, but she wasn’t in pain you know and she wasn’t unhappy…It’s hard to know what for mum is the best quality of life really.
2. Perceived
a. Feeling of
Staff Interview 2 It’s quite bad but in bed we don’t put her glasses on because she tends to bump her nose. She’s had a few, not accidents, like pressure points with her glasses on We tend to put her glasses on when she’s in the day room but there doesn’t appear to be any difference in her vision whether she’s got her glasses on or not and she does constantly stare ahead. The same as when she, sometimes you get a bit of a she moves her eyes and looks at the source of the noise She always, always, I mean her legs are like a vice, they’re crossed like that constantly. She …but that is from home before she came here and before she fractured her femur. N says that was quite early on in her condition Staff Interview 1 Aye, so now she’s mostly on bed rest now. I think her condition’s
Now when she is touched she grimaces and withdraws from this Despite all these physical problems and her mother’s frailty her daughter has hope from moment to moment. She believes that her mum constantly changes and that if she is non responsive now that could change quickly.
The nurse while appreciating her frailty and perhaps because of it takes great pains to make her life as pleasant as possible. She does this by providing the best care she knows and checking with her daughter
Afraid of loud sounds
Ambient noise is fine Startle response
Grimaces and withdraws
She changes quickly
Doing her best The nurse expresses emotion about her and cries as she
Becoming fonder
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quality of life
belonging
deteriorated. About 3 months ago she took a massive stroke. We didn’t hold out any hope then, so we gave her, I’m sorry Aye, it’s like a family member. We put her on to fentanyl patches Staff Interview 2 I think as their illness progress you become more fond of them. I don’t mean that I’m not fond of my residents but I think you have a wee special thing for, as their illness progresses you want to make them as comfortable as possible.
b. Enjoyment of activity
Daughter Interview 1. I did, I sang a hymn one day and the word church came out you know and Christine was really good, she, she … thought even although mum, as I said she can, she's got brilliant hearing, so she use to put her on the rota and take her Well you’ve no idea, you’ve no idea really whether she enjoys it. She doesn’t not enjoy it and that's like you’re saying does she enjoy it, well you can’t ever say that she enjoys it but if she’s hearing it … in her room I sing to her Just any, any kind of music Church music, but she enjoyed all kinds of music. That's why they’ve got Classic FM on you know in, in her room Smiles often at the ceiling. Its as if she sees a face of someone she has known Smiles sometimes at a visitor or a voice Staff Interview 1 If you don’t go in and disturb her, we always make sure her music’s on. Right, her music’s on from 8 o’clock in the morning, 9 o’clock, whoever goes in to give her breakfast always makes sure her music’s on. It’s on all day, somebody’s in and out all the time and then when she, at bedtime when the night shift are settling her down they put the music off and put the big lights out.
talks about the condition she is in. She becomes fonder of them Like a family the frailer they become. member Validation of her nursing role perhaps Make her comfortable Her daughter is very unsure about her mother’s enjoyment of activity and feels they should do it anyway
The music features in the activity in all sources including her own response to this They are not always clear what the music should be and no one is sure what she might prefer to listen to
You cant tell Do it anyway Music is key What music for her?
Responds to music
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Talk to her Make sure her music is on, make sure she’s comfortable. Make sure she’s had plenty fluids. Make sure she’s nice and, she comes across as a lady that was always well dressed and nice and the girls always make sure she is always nice, well presented. Care Notes Care notes say she enjoys: Entertainment Exercising Film nights Visiting the hairdresser Enjoys photographs Meal times watching TV Observation She spends much of her time in bed where she always has the radio on. When popular music programme is played on the radio in her room she makes mouthing movements, sometimes she hums. Once she sang a phrase of a song and once she said “that’s good” When classical music is playing she does not respond in this way. When she is in the sitting room and ambient music is played she does not respond most of the time, occasionally making mouthing sounds or humming. Daughter Interview 2 I've heard her humming, uhuh.and you know, did she enjoy the journey in the wheelchair? It was a lovely sunny day and I’d like to think she got something from it but I don’t know if that’s me thinking that rather
witness smooth radio Staff don’t always put classic music on and she responds to different music differently. But they faithfully make sure she has music playing
Her care notes contain activities she has not managed for some time and none that apply now. Music is missing
Make sure care is given
Narrative is broken
Responds actively to music and both hums and occasionally sings. In the communal space she has much reduced reactions Stimulated by music. Her daughter is not sure if what she is doing is because she thinks it will help or if it
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than mum because of the lack of verbal communication actually works. She wants to it’s hard to get. I would like her to have every opportunity to hear music think it is helping.
3. Psychological wellbeing
a. Positive and negative affect
Staff Interview 2. I know she does enjoy music. She does like the radio on. Her daughter said she likes the classical music and that’s what we put on for her but I’ve never once seen her mouthing to music but she’s never got Smooth Radio on. We get a bit of a reaction to the music. Oh aye, she hears it, she hears it. You can tell by her facial expression, you know, she enjoys it. She does occasionally Daughter Interview 1 So there’s just the odd, I call it a breakthrough moment. I don’t know what you would call it. They’re few and far between now but we were so always delighted in the past when we got one. People say she’ll be happy in her own wee world. Nobody’s happy in their own wee world like that. It’s horrendous. An old, an old man in the care home last week was going about … all it is, they’re lost and they’re frightened. Uhuh, uhuh, brightest in a long while. I hope you, I hope you, it’ll be unlikely when you see her that you'll get a spell like that. Although there’s … one, where I, if she's not eating you know there’s something wrong. Well that oh yesterday was and the face was and the smiling, I mean and laughing, if every, if there’s a few visitors in and they laugh she laughs with you, so, uhuh, there are mannerisms that are still there definitely facial expressions you know. If she’s alert Smiles often at the ceiling. Its as if she sees a face of someone she has known Smiles sometimes at a visitor or a voice. Occasionally smiles at a photo. Grips your hand tightly if you take it when visiting
When I checked with her daughter about her singing along with the music, she was surprised and had not heard her do that. But her daughter played classical music with no words For some time her daughter has noticed that her mother’s response varied, physical causes can influence her ability to respond such as her recent health crises Her daughter wants her to connect as the idea of being in her own wee world horrifies her as she sees other residents not being connected and the resulting fear and anxiety this creates. Her daughter can see embodied behaviour and this includes mannerisms, reactions and facial
Want to help A different music A breakthrough moment Illness Interferes Her own we world is bad Creates anxiety Connection is happiness
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Staff Interview 1 and we just take each day as it comes now. We’ve been Some days she’s good and you get a wee spark but we constantly talk to her and we were all looking forward to this baby coming and we tell her about the baby every day. We told her, as soon as the baby was born we told her about the baby so We get a bit of a reaction to the music. Oh aye, she hears it, she hears it. You can tell by her facial expression, you know, she enjoys it. She does occasionally, uhuh.(smile) She makes a face. She doesn’t like water, she doesn’t like getting wet. She never always was like that before you know but now she just doesn’t like getting disturbed. She, she grimaces I mean all the residents are like that, they’re all well looked after but particularly because she can’t tell us, we, we like to make sure she’s nice. You see her, she has quiet days, what I call her quiet day. There’s not a lot of response, there’s really nothing there. we just chat away. I talk away all the time, regardless of how she is. On a good day she is more alert and she’ll turn around. If she’s having a bad day she’ll just, she’ll either look ahead or she’ll stare up and she’ll not respond. She’ll turn towards you Her head will turn. If she’s lying flat on and I go in and talk to her and we’re having a good day she’ll swivel round. Same when N comes, if I go in with N I’ll say here’s N coming and she’ll, she’ll react to N. She reacts to voices. She would just kind of stare straight ahead or stare at the ceiling. (on a bad day) Daughter Interview 2 She didn’t smile at all
expressions The nurse takes it a day at a time and responds to her as she finds her, but she does try to connect and break through the flatness but chatting and talking about things she might like e.g. baby coming
As it comes
Mrs musician has an expressive facial response and will smile and grimace at people things, actions and words
Break through
She shows changing affect and responds to pleasant experiences if she is in a good state however she responds to negative experiences always and in the same way but grimacing and withdrawing She smiles when she hears music.
Changing affect Positive responses are Variable Consistent negative responses Stimulated by music
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and she loves laughter No, no, but she, she loves laughter, that’s when you get the smiles 'cos we try and laugh when there's more than one of us. and the, the fan, I mean if it hits her I mean it’s as if it’s pain you know, any kind of wind and that was the problem with bathing and washing at home. The shower was out the question yet they say they shower her no problem at Morningside … she’s just progressed and you know that stage has passed
4. Objective environment
a. Material possessions
Staff Interview. 2 I know, maybe I don’t know, maybe she’s aware he’s a baby and I don’t know because she loves, she appears to love when he comes. Artefacts and environment Her clothing, pictures ornaments and some of her own paintings are available in her room (and a radio)
b. Social support
Staff Interview 1 A very close knit family 2 daughters, N, whom you’re, you’re working with. She had a lot of input but her other daughter lives up in Stornoway or Orkney’s and doesn’t have the same
c. Interperson al network
Daughter Interview 1 We were an extremely close and are an extremely close family of 4 but you know mum’s attitude was if she lost her mind we were to get on with our lives and not spend our lives looking after her and my sister says that’s what mum would have wanted I go twice a week
Doesn’t like personal care, water and being moved or disturbed
Don’t disturb me
Her body responds to stimulus Responds to the stimulus of the baby She has some but her vision does not really allow her to see these and no one seems to use many visual cues now except photographs She has good family support
Sight loss No cues
A good family
She has a close family and the nurse and daughter seem to have a close relationship leading A to feel that she is like a member of her own family. A knows all the details about the babies and clearly speaks to the
Carer relationships
Member of my
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Staff Interview 1 Aye, it’s like a family member. I think as their illness progress you become more fond of them. I don’t mean that I’m not fond of my residents but I think you have a wee special thing for, as their illness progresses you want to make them as comfortable as possible. Daughter Interview 2 If anybody asks can we bring anything for her I’ll just say just food, because that’s what she can, she still enjoys food. And really … got to go for the best scenario at the time and that’s been my attitude throughout.
daughter. This could be because of the recent near death period where the family were there constantly and they had a common cause. She gets more fond of her the more personal and close contact she has with her Food brings great pleasure
family
Becoming fonder Sensory stimulation
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6) Extract from the analytic process: one finding for Mrs Musician, Extract from the process of developing codes from the first level of analysis, using Lawton’s framework, to elaborative codes. This process is explained in detail in Chapter four. Initial codes (Lawton’s framework) Palliative care Unexpected recovery Hope from moment to moment She changes quickly Long illness Clouded by illness Content Medicines have impact Make her comfortable Medication interferes She is comfortable Pain free
Poor vision Deteriorating health Pain management Medication effects Chronic pain
Interrogation and iteration
Elaborative coding
Finding
Mrs Musician is situated in a care setting where she is perceived to be in need of care and has been treated using a palliative model following a stroke. She has since had a degree of recovery and this has led her daughter and staff to change the way they view her situation and care. She is no longer situated within a palliative care model but neither is she situated as she was before the stroke. Her embodied state now is considered to be fragile and she is framed by the context of her illness, pain management and the likelihood of her survival or that she might continue in this condition. The ambition of family and staff is for her to be free from distress and pain. Her daughter would wish her to be more alert and responsive especially when she and the family are there. She is torn by the use of medication, which she believes is making her mother distant and unresponsive. However she is not yet ready to face her mother’s death. Mrs Musician is considered to be deteriorating in her general health. She is already experiencing advanced dementia which has a vascular component and she has had a recent stroke. Her vision is poor and she is mainly being nursed in bed. She is considered to be in pain although she receives medication and
Do you want to prolong it?
Clouded by illness: responding to complex needs
Her condition is deteriorating
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Mainly bedbound Giving extra input. She can do nothing Has mixed dementia Illness interferes Sight loss
certainly when being observed she shows no sign of distress. This deterioration has led to staff spending more time with her according to the staff member but during observation she does not appear to have any more attention than other residents.
Avoid distress Afraid of loud sounds Ambient noise is fine Loud sound Startle response Sensitive to touch Grimaces and withdraws Reacts to cold Dislikes water Making care fit Unwelcome care Don’t go so fast I hate the cold and wet I can show what I don’t want Do care quickly Daily life drifts in Body reacts to change Don’t disturb me
This is one the most difficult challenges for all involved, as she Don’t disturb her has always disliked water and cold. She shows real distress and dislike for both by grimacing and withdrawing from staff who try to wash her face. She will allow staff to apply face cream and shows obvious pleasure at this activity. It is clear she is still aware of the care she receives and is able to communicate to staff by using her body to show them that their care is not welcome to her. The response she has is able to show that she is not only aware of what the staff are doing but is also able to make her wishes known about the care they provide. Staff respond by carrying on with the activity and despite her body response will still wipe her face. This does not show any acceptance of her agency and there is little attempt to respond to her refusal. There is a shared understanding with family and staff that Mrs Musician does not like washing but not noted anywhere and no discussion has been had about what might be done to make care welcome. Despite this they agree that they do not want to disturb her.
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