person-centred planning. THE NEEDS of people with an intellectual disability and dementia can change on a daily basis and it is vital that care and support are ...
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Developing person-centred planning in dementia care Judy Ryan and Eileen Carey discuss health action planning for an older person with an intellectual disability and dementia, and her circle of friends Summary
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This article provides an overview of the current literature on person-centred planning, health action planning and associated concepts such as facilitation and advocacy. It explores how flexible approaches to person-centred planning and health action planning were introduced and adapted to meet the individual daily changing needs of Anna, an older person with Dov\/n syndrome and dementia. Keywords Down syndrome, dementia, leaming disability, intellectual disability, models of care, person-centred planning
THE NEEDS of people with an intellectual disability and dementia can change on a daily basis and it is vital that care and support are regularly adjusted to meet emerging needs. This article describes how nursing input ensured that .Anna (not her real name), an older person with and intellectual disability and dementia, lived the fullest lile possible. .'Uina and her support network were guided by a registered nurse for intellectual disabiliry (RNID) who helped develop a person-centred plan of care based on a combination of two frameworks: Essential Lifestyle Planning (ELSP), which focuses on communicating with Anna and her circle of support to identify what was Important to and for her. Making Action Plans (MAPS), which supported Anna by developing a colourful graphic record of her plan. Communication was embedded in the development of an interactive communication strategy that guided the development of a Personcentred Plan (PCP) and a Health Action Plan (HAP). The biggest challenge in developing this plan was Anna's underlying dementia, an illness that is June 2009 I Volume 12 | Number 5
progressive, resulting in unpredictable health status. See case study opposite.
Person-centred planning Person-centred planning is a process of discovery, a way of supporting a person and his or her family to identify what is important to them in their lives while identifying what is necessary to achieve it (Mount and Zwernick 2000, Department of Health (DH) 2001, O'Brien and O'Brien 2001, National Disability Authority 2005, Kilbane and McLean 2008). This inclusive process involves actively listening and understanding, while identifying the need for supports and resources to enable person-centred action to and for the person (O'Brien and Mount 1991, Sanderson ff al 1997, Mansoll and Beadle-Browne 2004, Kilbane et al 2008). Authors in the field of person centeredness and gerontology identify person-centred care as inclusive of all those in the care environment, where their personal values and the living environment represent a person-centred philosophy (Brooker 2004, McComiack 2004). People with intellectual disabilities have opportunities to identify and discuss their perspectives on their health needs and quality of lite outcomes with intellectual disability nurses who provide frontline care.
Person-centred frameworks Essential lifestyle Planning (ELSP), developed by Smull and Burke-Harrison (1992), was used in the assessment process to address what was important both to and for Anna and to identify supports necessary and action required lo achieve goals (see Box 1). When selecting a plan to suit Anna's social and healthcare needs, a flexible, inclusive process was an important consideration. The Mental Capacity Act (2005) advises that capacity is assumed unless LEARNING DISABILITY PRACTICE
Feature proven otherwise, that citizens are entitled to assistance in decision making, and that the 'best interest' principle is applied where the person lacks capacity. Anna did have an underlying illness that on occasions rendered her too unwell to make decisions about her care. The planning process acknowledged what was importiint lor Anna and provided an opportunity to address her healthcare needs, which had a very real impact on her lifestyle. Whenever possible, -Anna's capacity to make healthcare decisions was acknowledged and used. Communication strategies were devised early in the planning process to address the problem of Anna's limited universal communication .skills {Sanderson 2003). It is common for a person with dementia to become confused about time and place and this may result in anxiety and stress. Anna liked going for walks, but she required the use of a wheelchair. This net essitated the assistance of a support person to both suggest going for a walk and make it happen. I'rior to the walk, .Anna's red coat would be brought to her and an explanation of the proposed activity offered, which in turn helped to orientate her. This enabled Anna to make the choice of whether or not she wished to go for a walk. MAPs are useful when getting acquainted with an indi\1duiil, It afforded .Anna the opportunity lo identify dreams and goals, while recognising her strengths and what were considered to be her nii-htmares. Using the MAPS framework supported IIK' person centred process and highlighted the support that existed for Anna inside and outside the service (Mansell and Beadle-Brown 2004).
Facilitation The intetlecmal disability nurse worked closely with the multidisciplinary team and shared knowledge of the influence of policy and legislation on the lives of people with intellectual disability. For example, Ihe nurse shared information about the Mental C .ipacity and Guardiansliip Bill (2008) ensuring that the people who supported Anna were aware of and Initiated best practice when Anna's capacity' to make decisions was compromised. The intellectual disability' nurse was ideally placed to observe and document the daily changes in Anna's condition. Kilbane et al (2008) suggest that facilitation and leadership are required at organisational and indi\1dual levels to implement person-centred planning successfully. The intellectual disability nurse is an autonomous practitioner and autonomy in decision making relating to the facilitation of inter-disciplinary working is enhanced by an ability to lead with values that reinforce practice (An Bard LEARNING DISABILITY PRACTICE
Determining capacity in the vulnerable adult can be supported by the continual use of explanation and visual aids Altranais 2000). The role of the facilitator was to lead Anna and her circle of support in her personal discovery, in co-ordination of sessions and the dissemination of person-centred information (Ritchie et al 2003). Bevis (2004) states that person centeredness is also about the person delivering the care. The difficulty with any person-centred ideology arises when there are existing barriers to effective communication at a personal or service level. Supporting the person with an intellectual disability to reach his or her goals, while achieving autonomy in decision making, can be particularly chiülenging when communication is compromised. The people who support Anna were encouraged to address person centeredness from a personal perspective (Kilbane et al 2008) whilc' maintaining objectivity in relation to their own beliefs and values. Advocacy could be viewed as a mechanism to achieve this end (Simon ef al 2002, Veron 2002).
Advocacy Nurses facilitate advocacy rather than act as advocates themselves Qenkins et al 2006). Wheeler (2000) suggests that the nurse should not act as an advocate because their position as employees compromises their objectivity. For Anna, advocacy services were crucial, particularly as her illness progressed and decisions needed to be made in her best interests in relation to her medical care.
Case study Anna is a 60-year-old woman who spent all of her childhood, and almost all her adult life, living at home with her mother. She has one brother. Following the unexpected death of her mother in 2001 Anna was admitted to a residential service for people with intellectual disabilities and lived with four women and support staff. In 2004 Anna became unwell with pneumonia and was admitted to hospital, where she remained for four months. She was subsequently discharged to a residential unit that addressed the end-of-life care needs of people with intellectual disability. Anna has Down syndrome and mid-stage dementia, with associated loss of skill and mobility, and diminished verbal skills.
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Feature Box 1
Anna's person-centred plan
What is essential for me?
What is important for me?
What pleasures do 1 wish for?
Communication strategy For ail who have contact with me to be
Friends and family: Company, My life photography book
Visits, chatting with people
aware of my communication strategy
Personal:
Personal:
Friends and family: Brother, Marie, My life photography book
My bedroom, Nice ciothes, My personal
Nice clothes Social opportunity:
Health: Physical comfort, medication for epilespy
belongings Social opportunity:
Friends and family;
Walks in the garden
Opportunity to try new things however small
Spiritual: Going to mass What do people who know me say about me? Personal: Loves her brother and company, Likes to chat to
Personal Atb-ibutes:
people Loves hugs and is joily, Has a lovely smile Can't talk like she used to, Will let you know if she
nice
Kind, Can laugh easily. Likes to dress Is different now
Opportunity: Likes to set the table, Likes going to mass on Sunday, Is a Daniel O'Donnell fan, would like to see him
is cross. Gives lovely hugs. Hates the dark, Likes the reminiscence room, Likes to look at her things if she is in bed. She likes to dress nice What do I need?
What are my nightmares?
Communication; All those around me to understand my non-verbal communication, I need time to filter information before responding to conversation/ questions. My picture portfolio
Communication: Not been afforded enough time to respond to questions/ conversation. Not being understood. Being in pain or discomfort and no one trying to help me
Social opportunity: I need my brother and friend Marie to feel welcomed to my home and be able to visit at any time. I need support in maintaining contact with my friends and family. Needs someone to advocate on my behalf, 1 need support with everyday tasks, Daniel O'Donnell music. Meaningful social activity, I need to have a laugh
Social opportunity:
Communication: Anna communicates mainly using non-verbal cues and gestures and, on occasion, she can respond with '1 will', 'I'm fine' (when asked how she is) and 'Oh, Mammy' on occasions when she appears in distress or groan out loud if in pain. Anna may have a delay in her response time and needs you to take your time and give her a chance to respond. You need to position yourself v^ithin Anna's line of vision when you are speaking to her. Anna might get cross if you do not tell her before you assist her wWh care tasks. She may try to push you away because she is startled by what she perceives to be your sudden action.
Health and safety: Anna licks the side of her finger and it can sometimes become sore. She has some other safety issues and needs you to make sure that she is positioned comfortably with her hips angled and is not in danger of falling from her chair. She uses a low bed that is close to floor level in case of a seizure where she may have difficulty protecting herseif in a fall. Anna has difficulty swallovt/ing her food and on these occasions needs your full support, She is supported with this by her Speech and Language therapist Annette.
Not having Marie vist. Not having my photograph album in my room Personal; Forgetting things. Being left in the dark or taken into a dark room
Anna's inidividual traits and likes: Anna can laugh heartily for a period without anyone understanding what she is laughing at - enjoy these times. Anna loves her weekly massage and music group. She likes the physio-acoustic therapy chair but hates the snoezelen room and likes to rest on her bed for a short time after dinner.
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Feature Capacity can fluctuate with situations and time (Foster and Turner 2007) and determining capacity in the \'ulnerable adult has to be supported by the ( ontinual use of explanation and visual aids (Law Refonii Commission 2006). This was particularly relevant when considering Anna's underlying dementia as her HAP was developed. When Anna's capacity was questioned alternative methods of addressing her health issues were discussed with her circle of support. On one occasion Amia refused to eat her dinner because she believed - incorrectly - that she had just eaten. As a proactive measure the nurse co-ordinated a meeting with .-Xnna and her circle of support to address Anna's refusal to eat. It was agreed that it wtmid be in Anna'.s best interests to monitor her nutritional inlake and set up a communication strategy to help maintain good nutritional health. She was offered a variety of food and drinks at frequent intervals, and as she had difficult> in swallowing she was supported and discreetly supervised while eating. This resulted in an increase in Anna's overall food intake.
Health action planning In the UK the DH white paper Valuing People (200i) stipulated that everyone with an intellectual disability' had to have a HAP by 2005. Following a review, the DH (200H) recognises the role that HAPs liave in improving and maintaining health with and for Ihe person. Thompson and Cobb (2008) suggest that integrating person-centred planning and health action planning aifords a seamless approach to planning and .supports the notion of holistic personalised care. Within an Irish context the concept is relevant to the Transformation Programme 2007-20/0 {Health Service Executive 2007) which aspires to provide an equitable service lor all citizens. But the absence of legislation for this system of service planning nationally results in the fragmented application of health action planning and does little to promote the national agenda.
The role ofthe facilitator is critical and draws on the skill and ability of the intellectual disability nurse to promote personhood her verbal skills. Person-centred planning promotes listening, embracing the person's aspirations, and the absence of total communication can result in an impoverished plan (Skelhom and Williams 2008). Kitwood (1993) suggests that the person with dementia may possess a heightened awareness of body language. Active listening is considered by O'Brien and O'Brien (2002) as liberating. They' identify a triage of components involving in active listening. These are inclusive of proximity to the person when listening while facilitating participation and through voice. Finally, listening occurs when we actively encourage and listen to the life story of the person. .\ total communication approach with Anna included using her life book to chronicle her life, and audiotapes. The use of photographs and pictures rather than symbols was advocated because they were familiar to her and replicate the system of storytelling she was used to. Person-centred care was also dependent on the development of a narrative between the professional and the 'patient' that was grounded in trust, respect and knowledge sharing (McCormack 200:i).
Person-centred care relies on the development of a narrative between the professional and the patient
Communication Anna has Alzheimer's disease, which is the most common of the dementias (Down's Syndrome Association 2004). She is also partially deaf but v\ill not tolerate a hearing aid. An awareness of Anna's history of hearing loss meant that carers must approach her trom the front, within her line of vision, and give her adequate time to respond to questions. There may be a response delay, a feature of dementia which is exacerbated by the loss of physical agilit>' (Killick and Allan 2001). The onset and subsequent development of dementia also deprived Anna of LE
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The reciprocal nature of communication necessitated information sharing and the acquisition of personal communication awareness for those interacting with Anna. Being aware of fhe tone of voice and clarity- of the message when addressing Anna was imperative, because the aim of communicating, as always, is to create meaning (Bevis 2004). Attentive listening skills assisted the development of trust and the speciiicit>' of the language used assisted the overall communication strategy (Riley 2004). For example, .Anna had medical needs that had a descripti\'e language attached, which may have been difficult to comprehend by those on the margins of health care. Interpretation of this terminology was central to Anna's active participation in her care, and was reflected in her HAP. Recognising the need to use a variety' of communication methods was essential to the success of the process (Combes et al 2004). The ability of Anna's carers to recognise her non-verbal responses and correlate this to the pattem.s of her illness was an important consideration; in this incidence knowledge of dementia is essential to those who cared for her.
Conclusion
For author guidelines
Meaningful consultation with service users offers us an insight into what it is they perceive the service should entail, and in turn guides the development of organisations (Raynes et al 2001, Roberts 2002, Wick ef al 2003). While the frameworks for implementation offer a guide to the development of a plan, they should be viewed as just that. Failure to do so could render personcentred planning another prescriptive standardised system of recording care provided.
visit tiie Learning
Facilitating communication strategies that enable the person to communicate his or her needs is central to the philosophy of Nothing About Me Without Me (DingwalJ et a¡ 2006). This considers the human rights and choices of the person while using a process that is enabling to the person. The role of the facilitator is critical and draws on the skill and ability of the intellectual disabilit> nurse to promote personhood - a key feature of person-centred care (McCormack 2004). Person centeredness begins with ourselves, our values and our beliefs: once considered, we can be truly person-centred to others.
subject to double-blind
Disability Practice Inome page at www. learningdisabilitypractice. co,uk For related articles visit our oniine archive and search using the keywords This article has been review
Judy Ryan is the nurse practice development facilitator, Intellectual Disability Service, HSE Midlands Region, Ireland Eileen Carey is a lecturer. Department of Nursing and Midwifery, University of Linrierick
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