Interrogating Person- centred Dementia Care in ...

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Journal of Social Work 1(3): 329–345

Interrogating Personcentred Dementia Care in Social Work and Social Care Practice

Copyright © 2001 Sage Publications: London, Thousand Oaks, CA and New Delhi

J O N AT H A N PA R K E R University of Hull, England

Abstract

• Summary: Traditional approaches to the understanding and organization of dementia care, often drawn from medical perspectives, are examined. Alternative understandings based around the conception of ‘personhood’ are critically considered. Some of the philosophical challenges and practical difficulties raised by this debate are explored in the context of care management in the UK. • Findings: The concept of personhood presents a challenge to traditional thought and has been influential in promoting the ‘new culture’ of dementia care within health and social service settings. It is crucial in contemporary social and health care to retain a clear sense of the person with whom we are working at any point in time. Medical, sociological and psychological approaches to dementia should not be seen as mutually exclusive. • Applications: A shift in culture and thinking does not deny the importance of medical advance but adds a holistic and human element that brings back the person with dementia to centre stage. While the diseases underlying the personal and mental deterioration are important, it is equally important to consider how the disease and its characteristics are interpreted by the person with dementia, their carers, professionals and wider society. Keywords

bio-medical care management dementia intersubjectivity

personhood

This paper will critique traditional approaches to and definitions of the understanding and organization of dementia care which are often drawn from medical conceptions. The meanings and perceptions created by traditional bio-medical approaches to dementia care will be examined. An alternative understanding 1468-0173[200112]1:3;329–345;021068

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based around a conception of ‘personhood’ will also be critically examined. This conception presents a challenge to traditional thought and has been influential in promoting the ‘new culture’ of dementia care within health and social service settings. This assumed or desired cultural transformation will be considered and some of the philosophical challenges raised by it and practical difficulties in the context of care management will be debated. In conclusion, the importance of the person, his or her biography and the construction of dementia in the daily practices of those involved with the person with dementia (including that person) will be presented.

The Bio-medical Model as an Understanding of Dementia The bio-medical model of dementia has gained widest credence and acceptance in social and health care. It is this model that is most frequently called to mind and understood when professionals and the general public consider dementia, especially perhaps those who are looking after a relative or significant person with dementia (Bayley, 1998; Forsythe, 1990). Dementia is associated predominantly in the thoughts of most people with a clearly recognizable and describable medical condition. This situation has obtained since Alois Alzheimer’s research was championed by Kraepelin (1910) in his seminal categorization of psychiatric illness and the ‘rediscovery’ of Alzheimer’s and dementias in the 1980s (see Cheston and Bender, 1999). The bio-medical model considers dementia in terms of disease pathology or something being wrong in part of the body, in this case the brain. The subjective perception of dementia as illness is accepted by medical practitioners (Murphy, 1986) but does not form part of standard traditional medical definitions. Generally accepted bio-medical definitions of dementia have been reached (Royal College of Physicians, 1981; Lishman, 1987; Gelder et al., 1989; World Health Organisation, 1992; Audit Commission, 2000). Dementia is taken to represent a deterioration of previously normal functioning resulting from underlying brain damage or disease. The dementia eventually affects all the person’s thinking and problem-solving abilities; it is global. The impairment results in a progressive deterioration of all learned skills important for daily living, interacting and communicating with others and functioning as an individual. This has led to existential concerns about the ‘loss’ of the person or the self through the disease process (Sabat and Harré, 1992). The problems associated with the bio-medical definition are aptly summarized by Cheston and Bender (1999: 53): ‘(d)ementia is a diagnosis by exclusion – it is what you have left when you have excluded all other sources of confused behaviour’. The idea of loss of self rests on unquestioned or received philosophical assumptions that either privilege the economic validity and functional capacity of the person or conceptualize self and personhood in universal terms that accord value to rationality and freedom of choice. These assumptions are taken as key principles in the traditional definition of the self. The idea relies on the 330

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acceptance of absolute truths and values, which creates problems for social workers operating in situations of complexity and diversity. Dementia is not only seen as the result of certain disease processes. It is also seen as a collection of behavioural changes and responses that indicate its presence – dementia is seen as a syndrome (Gilleard, 1984; Jorm, 1987; StuartHamilton, 2000). It is recognized that the characteristics described are general and each individual displays different sets and with different emphases. This will depend on past history and functioning, where they live and with whom, and what type of disease is thought to cause their dementia. However, when a cluster of these characteristics is evident they become defined by the label generally attributed to such behaviours, which is dementia. It is perhaps not surprising that bio-medical approaches exert such control, since they have been developed within the field of medicine where techniques of naming (diagnosis), pronouncing (prognosis) and ordering (prescription) ensure a mystique of efficacy and knowledge is created in the minds of users. This view feeds on the popular semiotic of medicine that accords a power to the diagnostic and treatment process somewhat akin to the lector-priests of ancient Egypt (Gottdeiner, 1995; Turner, 1987; see also Foucault, 1976, 1979). However, the predominance of bio-medical perspectives holds sway despite recent adverse reactions against the profession seen in the trial of general practitioner Harold ‘Fred’ Shipman (who was responsible for killing a large number of his patients), problems with cancer screening, the cancellation of operations and the use of child body parts without the consent of parents. A central issue and potential danger with the assumed and traditional biomedical model is that it creates the potential for optimism. It suggests the possibility of a ‘cure’ or at least retarding the progressive deterioration and loss of function associated with dementia. While it is the case that medical advances do continue (Matthews et al., 2000), the potential for cure is not currently fulfilled in practice. In fact, the model may create false hope in people and the popular social construction of medicine may detract from social and emotional support services being made more readily available. What is certain is that research funding privileges the medicalization of dementia and the extirpation of disease (Gilleard, 2000), which, in turn, may devalue psychosocial aspects of caring (Murphy, 2000). This reflects debates of power within the general sociology of medicine (Turner, 1987) and also supports a critique concerning the gendered perspective of caring (Arber and Ginn, 1995; Dalley, 1996). A balance between the two positions – medicine and psychosocial care – is necessary. Neither model obviates the need for the other. It is important to note that the assumption of a bio-medical model is in itself a homogenizing construction imposed upon wide and varied phenomena describing disease entity conditions or clinically observable syndromes associated with organic pathology. There are differences discerned between the many types of disease underlying or causing the various dementias, which nosologists attempt to classify. 331

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The Impact of the Medical Model The bio-medical definition and description of dementia holds sway not only over the medical profession. It is also accepted by nursing professionals (Jones and Miesen, 1992), social policy theorists (Norman, 1982), psychologists (Bromley, 1988; Stuart-Hamilton, 2000), and social work and social care professionals (Marshall, 1990, 1996; Harvey, 1990). Bio-medical models are often internalized by family caregivers and people with dementia (Ignatieff, 1993; Askham, 1995; Grant, 1998; Bayley, 1998). This may have positive as well as negative effects. It can help to explain, justify and normalize behavioural, emotional and personality changes that could otherwise be hard for friends and relatives to bear. However, the bio-medical understanding describes a disease process or a syndrome that, as we noted earlier, is different for each individual depending upon their life experiences, coping skills, functioning, living situation, beliefs and values, and physical constitution among other factors. A central outcome of the bio-medical approach is that the person becomes subsumed beneath the label. It is the behaviour or the disease that is seen and reacted to rather than the person. The person is ‘lost’ twice in metaphorical terms – lost as he or she becomes subject to those professionals defining, categorizing and treating their ‘condition’, and increasingly ‘lost’ to the pathological changes causing the disease to progress. However, histopathological aspects of dementia have been challenged by research, as have the increasing medicalization of dementia and its historical acceptance (Bender and Cheston, 1999; Downs, 2000). Alzheimer’s description of Frau D and subsequent examinations have formed the basis of the pathological approach to dementia. The changes in the brain were accepted as causing the disease that led to the behavioural syndrome. Kraepelin (1910) included this definition within his medical classification on the basis of very few cases. From that time onwards the association had been made and research into the histopathological changes advanced. From his early research into dementia, Kitwood (1988) began to see psychosocial stress as a possible contributory factor to the development of dementia. He considered a range of evidence from post-mortem studies that indicated considerable variation in neuropathology challenging the initial findings of Blessed et al. (1968). The evidence suggested that some people who displayed the clinical symptoms of dementia had very little neurological damage. Some people who, at autopsy, displayed severe brain damage remained mentally intact. Thus, Kitwood concluded that the links between neuropathology and dementia are loose and by no means entirely proven. The difficulties with diagnosis have been recognized but the traditional disease-based approaches continue to predominate (see Woods, 1999). The bio-medical view remains influential on the ways in which people with dementia are viewed and treated, as shown by the recent Audit Commission Report (2000), Forget Me Not. Research included in the report indicated that only one in two family doctors believe it important to make an early diagnosis 332

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of dementia because of its untreatability and to prevent causing distress. Only half of the carers were told about the diagnosis and fewer still were given advice or information about dementia. The Audit Commission study focused on 12 areas in England and Wales and found patchy and inconsistent services. As a result the Commission determined to send auditors to every district in England and Wales to check on levels and quality of services. However, the pathological and inherently pessimistic views from the medical profession have been challenged. There are many different and varied ways proposed of approaching and understanding dementia. Cheston and Bender (1999) outline a number of these approaches as ways of explaining dementia in context. These include political/historical and sociological/professional models. Frameworks such as dementia as deviance, as loss, as trauma, as a subjectively experienced state or conceptualized in terms of disability are also considered. Models drawn from accident, mental illness and psychological regression are also posited. These are useful counterfoils to the predominant bio-medical model. It seems, however, that some critiques of the traditional bio-medically based understandings of dementia have been almost reified themselves. They have perhaps at least clearly articulated an alternative discourse, which has begun to assume power and influence in the field of social and health care. Concepts such as ‘personhood’ (Kitwood and Bredin, 1992; Harrison, 1993) and a ‘new culture’ (Kitwood and Benson, 1995) have been championed in dementia care. These concepts have assumed an acceptance that is at times seen as self-evident and therefore becomes unquestioned and understood as ‘common sense’. This brings potential dangers to social work and social care in failing to attend to the ways in which powerful concepts are used to forge identities and alliances among disciplinary groups. Such concepts may also exclude and marginalize those taking a different approach. This is happening at a time when interdisciplinary alliances are again being strongly promoted (NHS, 2000a; Department of Health, 2000a). Downs’s (2000) work provides a useful corrective to uncritical acceptance of these models. She describes the advent and ‘coming of age’ of a socio-cultural appreciation of dementia that attempts to introduce an understanding of the way that social and cultural contexts affect the experience of dementia and the response of family members. This model adapts the social model of disability and acknowledges diversity of meaning across cultures. This is fundamental to contemporary accounts of dementia care which have tended to neglect the area of cultural awareness and to homogenize experiences and service needs (see Patel et al., 1998; Whitehouse et al., 2000; Downs, 2000).

The Concept of Personhood Challenges to the bio-medical model are raised by sociological paradigms such as structuralism and the sick role theory (Parsons, 1951), withdrawal and 333

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disengagement theory (Cumming and Henry, 1961), labelling theory (Scheff, 1966), and social constructionism (Bender and Cheston, 1997; Gubrium, 1986, 1993; Harding and Palfry, 1997). The development of the concept of personhood has derived, in part, from these challenges and is central to the promotion and evolution of ‘new cultures of care’ for people with dementia in health and social care settings. It has come to dominate psychosocial care approaches to dementia. Kitwood (1997c: 8) summarizes the essential features of the model of personhood. It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust. Both according of personhood, and the failure to do so, have consequences that are empirically testable.

In part, the development of the concept has drawn upon the increasing emphasis on the individual’s subjective experience of dementia. This is taken up by Bender and Cheston (1997), who relate three important stages of development in the individual’s experience of dementia. These involve: • •

•

the generation of feelings of anxiety about what will happen, depression, grief (narcissistic injury) and despair; the development of behavioural responses to the process of decline, including denial (functional coping strategy), living in the past, attachment theory (dementia as a ‘strange situation’), apathy and withdrawal; the continuing emotional behaviour depending on the degree of cognitive impairment and (important) the social context.

It is the third stage that is promoted as achievable and axiomatic to high quality care in the ‘new cultures’ of dementia care in which personhood is explicitly valued.

The Emergence of the Person Murna Downs (1997) has produced a clear overview of, as she terms it, the ‘emergence’ of the person in dementia research in the social and behavioural sciences. Her literature review covers three main aspects of the person with dementia. These are: • • •

the individual’s sense of self; the person’s rights; the value to be gained from a concern with the perspectives of people with dementia.

The traditional view of dementia presents a picture of steady loss of self and decline. Downs points to the growing realization that memory alone does not make the person and that ‘loss’ may result from family members’ inability to 334

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keep up with changes and demands made upon them. The idea of the complete loss of self has also been challenged and identity is seen to be created intersubjectively (see Kitwood, 1997c).

Philosophy and Practice Personhood depends on an ethic for social care (Banks, 2001; Horne, 1999). The concept is not, however, without problems at philosophical, organizational and practice levels. Ethics prescribe the rules for practice. These rules for practice are commonly shared and often involve a sense of respect or reverence for the rights of the individual and his/her identity (Clark, 2000). In most ethical formulations within social work ‘respect’ forms a key precept. A deontological formulation would insist on the fulfilment of moral duty of respect according to a set of universal rules that hold true at all times in all situations. This position presupposes reason and rationality, universality and autonomy in making decisions. It does not take into account, therefore, structural factors or difference. Respect is required because it is assumed that people have the capacity to choose rationally between right and wrong, and are autonomous. The concept of personhood seems to emphasize the ultimate value and worth of the person (Kitwood, 1997a, b, c). If this kind of reasoning is held to underpin concepts of personhood, the difficulties when applied to people with dementia are clear. Rational choice demands full competence, a capacity for complex abstract moral reasoning and the opportunity to exercise this choice and reason. It does not offer an ethic for those who are too young, immature, incapacitated, or constrained by cognitive and intellectual functioning or by oppressive social structures. In fact, deontology would deny full personhood for people with dementia and therefore negate the duty of respect. A challenge has been levied against deontological positions from utilitarian or teleological thinking which focuses on outcomes and consequences to actions and which advocates choosing the action which maximizes pleasure and happiness for the greatest number. Clark (2000) believes this provides a more convincing rationale for humane and therapeutic treatment of persons whose behaviour is morally problematic, although teleological approaches are by no means without their critics (Thompson, 2000). It is clear, for instance, that exclusion and marginalization of those with special needs and differences becomes possible and justifiable using a utilitarian argument. The majority’s needs come first and services for people with dementia could be organized with the majority’s concerns privileged over and above the needs of people with dementia themselves. Their voice need not be heard. People with dementia may remain excluded for the greater happiness of caregivers, for instance. People with dementia are marginalized as a result of their ‘difference’ or ‘otherness’. They are often excluded as a result of age, gender and other demographic factors. A more humane teleological approach that understands respectful action as that which produces the best possible outcome in terms of 335

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pleasure/pain for all social actors would involve a degree of assumption of what this might constitute for individuals or groups. It could lead to the reification and imposition of ‘best outcomes’. Where this is not derived from the expressed or demonstrated choice of individuals it may reflect the denial of personhood rather than its promotion. In dementia care this is of particular importance. The emergence of the person as a focus of concern in dementia research takes respect for the person as central. However, it does so in a way that does not necessarily tie that respect to an assumed rationality or ability to make choices and decisions. Having said this, the assumed value or worth of the person is taken as given. It is this that needs to be framed in a coherent philosophy and theory. Perhaps Clark’s (2000) helpful view of ethics assists here. An ethic can be prescribed for care and held to be universal but without losing sight of its local, cultural situation.

Intersubjectivity and Self The differences between the deontological and teleological positions can perhaps be resolved somewhat by reference to the work of Giddens (1991), where he refers to the ‘reflexive project of the self’ to describe how individuals continually re-create themselves in society to guard against risk. He employs a seemingly traditional understanding of self-identity: ‘We begin from the premise that to be a human being is to know, virtually all of the time, in terms of some description or another, both what one is doing and why one is doing it’ (Giddens, 1991: 35). Humans continuously monitor their activities and the circumstances in which they occur, and posit reasons for them. This provides a degree of ‘ontological security’ in which the world becomes understandable while a demand for creativity and change is seen in creative involvement with other people. Giddens believes this to be fundamental to a sense of personal worth and psychological health. Acquired routines and daily practices . . . are constitutive of an emotional acceptance of the reality of the ‘external world’ without which a secure human existence is impossible. Such acceptance is at the same time the origin of self-identity through the learning of what is not me. (Giddens, 1991: 42)

For Giddens, however, subjectivity derives from intersubjectivity, from developing trust in others, and self-identity is not a given but is routinely created and relies on interaction and the ‘I/me/you’ differentiation. Self-identity is ‘the self as reflexively understood by the person in terms of her or his biography’ and the ‘capacity to use “I” in shifting contexts, characteristic of every known culture, is the most elemental feature of reflexive conceptions of personhood’ (Giddens, 1991: 53, italics original). Dangers to ontological security occur when a person lacks a consistent feeling of biographical continuity, which is understood reflexively by the person and can be communicated, to some extent, to others (see also Cheston, 1996; Goldsmith, 1996; Buchanan and Middleton, 1995; Mills, 1997). 336

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The importance of Giddens’s views for understanding personhood and dementia is that the reflexive and communicated nature of self-identity is fundamental and can be maintained or fostered in this interactive context. This indicates that a biographical approach and model to dementia care is fundamental. If the deontological approach is dropped and Kitwood’s deployment of Buber’s philosophy is joined with Giddens’s concept of self-reflexivity, we have the beginnings of consistent philosophy of dementia care. Kitwood (1988) developed an understanding that considers the whole person. By using social and cognitive psychology, he described how self-concept arises from social feedback and social comparison. In the most healthy settings people are valued and respected. This leads to a positive self-image. Where this positive sense of self is removed, as occurs in dementia, the sense of being or identity is lost or taken away. Kitwood proposes the concept of the dementogenic social environment. This means that the context in which the individual lives bears responsibility for much of the characteristic deterioration and decline associated with people who have dementia. Kitwood (1997c) locates the concept of personhood using the work of German philosopher and theologian Martin Buber (1937). In Buber’s work Ich und Du, translated as ‘I and Thou’, the concept is based upon experience and relationship. In the social world we have two ways of interacting: I–It relationships, which are cool, detached, banal and trivial and characterize the medical and psychiatric discourses, and I–Thou relationships, which imply a special intimacy, self-disclosure and spontaneity. The human being is counted as a person rather than an object. This challenges the traditional view of erosion of personality and loss of self (Downs, 1997). These ideas are counted as fundamental if we are to understand dementia. Even when there is severe cognitive impairment an I–Thou meeting may be possible. Persons are counted as unique and as making their own meanings. Interactions occur when an individual interprets the meaning of others’ actions and personality is viewed as the individual’s stock of learned resources for action. Self-identity, for Giddens, is found: . . . in the capacity to keep a particular narrative going. The individual’s biography, if she is to maintain regular interaction with others in the day-to-day world, cannot be wholly fictive. It must continually integrate events which occur in the external world, and sort them into the ongoing ‘story’ about the self. (Giddens, 1991: 54, italics original)

The centrality of establishing a continuous self-narrative is seen in the reconstruction and reinterpretation of past events in the light of the present. This provides the potential for establishing a trajectory of the self in the future. This is particularly important for dementia care. It provides for optimism in continuing the biography of the person as he or she interprets it on a continual basis, and looks to the future of the person. Lifestyle, or the integrated set of practices that give material form to an individual’s life, according to Giddens, is also 337

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important to the development of a continuing biography. Downs (1997: 598) concurs: People with dementia are presented as people with unique biographies, personalities and life circumstances, all of which interact with the neurological impairment . . . ‘personhood’ or the sense of self-identity or self-esteem is maintained by relationships and is the responsibility of those who are cognitively intact.

Developments in reminiscence work and validation are linked to this acknowledgement of the importance of the self. This acknowledgement is further confirmed by growing research into the retention of a degree of selfawareness despite cognitive impairment. This allows for accepting changing selves and encouraging psychotherapy and counselling for people with dementia (Sutton and Cheston, 1997; Cheston, 1998).

Organizations, Accountability and Person-centred Practice It is in the day-to-day worlds of practice that personhood leaves the conceptual and the abstract realm and becomes acted out. Daily practices in social care construct the worlds in which people re-create and continue to develop their biographies, as with any social entities (Clarke, 2000; Gubrium and Holstein, 1990). The contemporary context of social care work with adults in the UK is located within the processes of care management: Community Care Assessments, care plans and reviews which reconstruct the experience of dementia and personhood for those involved by subjecting them to processes associated with social care for people with dementia. Major changes are planned in social work and social care (see the Care Standards Act 2000; Department of Health, 2000a; NHS, 2000a). Attempts to provide a trained workforce (TOPSS, 1999; Department of Health, 2000a) have identified a need to train practitioners in social gerontology and in particular in dementia care (TOPSS, 1999). This includes those staff involved in the commissioning and provision of services – in fieldwork, residential and day care settings, and across a mixed economy of service provision. Alongside these changes greater attention is being paid to a more rigorous evaluation of personal social services (Department of Health, 1999a, b; 2000b). These changes are likely to have an impact on social care delivery at a range of levels – individual, agency/team, organizational and structural. The impact of these changes on the development of person-centred approaches to dementia care is potentially dramatic. Accountability is increasing in social work and social care. This is seen in the Performance Assessment Framework (Department of Health, 1999a, b; 2000b), the Quality Strategy for Social Care (Department of Health, 2000a), the legislation for a General Social Care Council, and the National Carers Framework in the Care Standards Act 2000. This increasing accountability is designed to protect the public and to ensure that services meet specified standards. The modernizing agenda for 338

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social services of the UK government has developed new arrangements for the assessment of social care performance under its Best Value initiative. Performance assessment draws on a range of sources of information to provide an overview of performance and quality. These include performance indicators, annual overviews and SSI or SSI/Audit Commission Joint Reviews. The aim is to address Best Value performance plans and assist in the planning of social care within the regions, ensuring accountability and promoting best practice and joint working (Department of Health, 1999b; 2000b). It may be considered that such accountability lends itself to actualizing personhood in a concrete way by promoting safe practice and service user rights. However, this need to oversee and make accountable may become an end in itself. This may lead away from the ethical deployment of social care in which the meeting of abstract standards supplants that of a genuine meeting of people’s needs. The bureaucracy involved in the processes of accountability and risk-averse contexts of practice can marginalize the person to preserve the discipline (Clarke, 2000) and create obstacles to intersubjectivity by increasing demands on time. If this occurs we may have reached a nihilism akin to Nietzsche’s (1956) suggestion that values and ethics are no longer part of the social world and accountability is part of a desire to punish (Nietzsche, 1990). The development of an ethic for social care in the context of accountability demands attention (Clark, 1999) if personhood is to retain any validity. A further difficulty in social care practice for people with dementia may arise, and this derives from personhood in a more direct way. Kitwood’s work led to the development of a tested and reliable mapping instrument for observing and evaluating the quality of dementia care (Kitwood and Bredin, 1992). Dementia Care Mapping is well researched and used widely in social and health care settings (Brooker, 1995, 1999; Brooker et al., 1998). It is an evaluative method that has been developed from an ethical concern to promote well-being and best practice. However, in a culture concerned with performance management and increasingly bureaucratic accountability, the dangers are that the mapping will become an end in itself and the well-being of the person and quality of care will be lost from it. The need to evaluate and to score well may take precedence over changes to care practice, individual care planning and inclusion of the person with dementia. A risk-averse culture mediated by stifling regulation, increased bureaucracy and techniques of accountability for its own sake will prevent the development of personhood. There are also potential difficulties that remain largely unaddressed in Dementia Care Mapping. An emphasis on subjectivity, rather than intersubjectivity, may privilege western cultural paradigms at the expense of other traditions. The continued examination of an ethic of personhood by the individual may be achieved as part of the social care worker’s daily practice and continued creation of narrative biography. Dementia Care Mapping may be an important tool to assist, but the emphasis must remain on the ethic of personhood and not managerial accountability and control. The emphasis on user involvement (Department of Health, 2000a) is a 339

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useful counterbalance to the imperative of efficiency and cost-effectiveness demanded within service provision. However, for the person to remain central, as opposed to the needs of the service taking centre position, a critical emphasis on the ethics of social and individual care must be encouraged and continue. Clark (1999) is clear in his call for social workers to tackle the ethical dilemmas created by demands for accountable practice within the law, social care organizations and professional ethical codes and research-minded practice.

Daily Practices The work of Bourdieu (1996) and Morgan (1999) adds a further perspective that can take forward the concept of personhood in dementia in a distinct way. The idea of daily practices allows us to conceptualize how the person with dementia is understood in a local and cultural context by examining the actions of those involved with that person. The systems and patterns employed create a picture of meaning of dementia and the value attached to the person with dementia. They also provide the potential to change those actions and to move towards personhood located in respect and value of the contextualized worth of individuals. This is important for social work and social care practice which has prided itself on the development of clear values for practice and antioppressive practice (Thompson, 1998). It is also important in understanding and developing social work practice following from Downs’s work on recognizing socio-cultural contexts. Daily practices (and le vécu) relate to local cultural contexts. The personhood ethic implies interaction and a concern with daily practice – what individuals, families and professionals, including social workers, do (Addington and Wegescheide-Harris, 1995; Lantz et al., 1997).

Concluding Remarks In social work a way forward is seen in developing biographical and narrative approaches. These rely on an ethic of intersubjectivity and subjectivity that accords worth to persons not because of an absolute ideal, nor simply because of maximizing positive outcomes, but because of emphasizing connectedness and interaction as fundamental to the maintenance of personhood. Practice is undertaken in localized contexts and informs wider levels – agency, policy and social levels. There are three themes running through this understanding of personhood: • • •

the uniqueness of each person: each person is recognized as a combination of experiences and social psychology; subjectivity: accumulated experiences and reactions accepted in each person lead to a true meeting of ‘subjects’; relatedness: personhood requires a living relationship, bond or tie as human beings are social beings who form and need attachments.

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Kitwood’s view: . . . to care for others means to value who they are; to honour what they do; to respect their unique qualities and needs; to help protect them from harm and danger; and – above all – to take thoughtful and committed action that will help to nourish their personal being. In such ideas there is a strong recognition of the interdependence of human life, the fact that no one can flourish in isolation; the well-being of each one is linked to the well-being of all (Kitwood, 1997a: 3)

provides an organizing framework for social care work based on intersubjectivity rather than accountability. This still allows opportunities for evaluation and outcomes in relationships and well-being. It provides an important corrective to the over-emphasis on mechanistic procedures of accountability. Medical, sociological and psychological approaches to dementia need not be seen as mutually exclusive. In fact, it is best to see them as interdependent. While the diseases underlying the personal and mental deterioration are important (and, in the future, medicine may provide ways of retarding its progress and treating the person), it is equally important to consider how the disease and its characteristics are interpreted by the sufferer, carer, professionals and wider society. These understandings have a great bearing upon the approaches to intervention undertaken, and, in a wider sense, the policies and care provided. It is crucial in contemporary social and health care to retain a clear sense of the person with whom we are working at any point in time. We must also keep firmly fixed in view what we are working to achieve and what the impact of the illness is on that particular system and network of individuals. It must be remembered that this is likely to alter and change over time and we need to remain alert to this probability and to the nature of the potential impacts of dementia in our dealings with individuals. A shift in culture and thinking does not deny the importance of medical advance but adds a holistic and human element that brings back the person to centre stage. References

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is a Lecturer in Social Work in the Department of Social Work and Community Health at the University of Hull. Address: Department of Social Work and Community Health, Faculty of Health, University of Hull, Hull HU6 7RX, England. [email: [email protected]]

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