Chapter 15 – What Can Person-Centred Care in Dementia Learn from the Recovery Movement?




Abstract




This chapter explores the concept of ‘recovery’ and its applicability to older people with mental health problems and specifically those with dementia. A previous paper noted the complementarity, shared values and convergent evolution of recovery-focused and person-centred approaches in adult and older adult care and the considerable opportunity to learn from one another. This chapter revisits the development, similarities and differences in these values-led approaches and the further developments that have arisen in the last 10 years. We propose that there continues to be a fertile and mutually supportive opportunity to share inspiration and practice. Some readers may be very familiar with this emphasis and the approach we outline and feel we are ‘stating the obvious’ concerning practice that is already established. We wish this were the case, but when we look beyond assent to theory, seeking well-established practice and positive outcomes, we note these philosophies still have a good way to go before they are enshrined as common practice and universally available to those who need them.





Chapter 15 What Can Person-Centred Care in Dementia Learn from the Recovery Movement?


Laura Hill , Glenn Roberts and Rachel Perkins



Introduction


This chapter explores the concept of ‘recovery’ and its applicability to older people with mental health problems and specifically those with dementia. A previous paper noted the complementarity, shared values and convergent evolution of recovery-focused and person-centred approaches in adult and older adult care and the considerable opportunity to learn from one another.1 This chapter revisits the development, similarities and differences in these values-led approaches and the further developments that have arisen in the last 10 years. We propose that there continues to be a fertile and mutually supportive opportunity to share inspiration and practice. Some readers may be very familiar with this emphasis and the approach we outline and feel we are ‘stating the obvious’ concerning practice that is already established. We wish this were the case, but when we look beyond assent to theory, seeking well-established practice and positive outcomes, we note these philosophies still have a good way to go before they are enshrined as common practice and universally available to those who need them.



What Do We Mean by Recovery?


Recovery can ordinarily be described as ‘to return to a normal state of health, mind or strength’, but ideas about recovery in mental health are not viewed in terms of ‘getting better’ and ‘cure’. In mental health care, ‘recovery’ has come to have a different meaning which is less about clinical perspectives on ‘recovering from an illness’ and more about personal perspectives on ‘recovering a life’.2 The roots of this movement in psychiatry have been traced back to humanistic philosophers, social activists and compassionate clinicians over the past couple of hundred years,3 with a central emphasis on learning from the testimony of individuals describing their own experiences of adversity and recovery.4


The definition by Anthony has become widely accepted in mental health.5 He described recovery as ‘a way of living a satisfying, hopeful and contributing life even within the limitations caused by illness … a deeply personal and unique process’. He said,



recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of illness. … Successful recovery from a catastrophe does not change the fact that the experience has occurred, that the effects are still present, and that one’s life has changed forever. Successful recovery does mean that the person has changed, and that the meaning of these facts to the person has therefore changed.


This redefinition of recovery has opened opportunities for people previously seen as suffering from severe mental illness to enter an open-ended process of seeking to discover how best to live well, even in the context of continuing symptoms and disabilities.


Until relatively recently ideas about recovery have typically focused on younger adults. The term ‘recovery’ is used much less frequently in mental health services for older adults and rarely with dementia. Woods has argued that the applicability of concepts of recovery to older people with functional mental health problems is clear, but at first sight ideas about ‘recovery’ may seem incompatible with a progressive and ultimately fatal condition such as dementia.6 There are reasonable concerns that using the term ‘recovery’ will generate unrealistic expectations in dementia. There are worries it might give credence to unlicensed remedies of dubious provenance offering cure and negate the devastating consequences of the condition. It can provoke confusion or frustration from clinicians, patients and relatives when taken at face value. Yet there are many who believe the fundamental principles in recovery of hope, choice and opportunity are equally applicable to dementia care:



Even for conditions where there is as yet no cure, as with dementia, improvements in care and treatment are achievable and can make a significant difference to older people’s quality of life … ‘Recovery’ and well-being approaches to mental health issues developed by younger adult service users and working-age mental health services are equally applicable to older people. ‘Recovery’ does not imply ‘cure’, but builds on the personal strengths and resilience of an individual ‘to recover optimum quality of life and have satisfaction with life in disconnected circumstances’. Recovery is about the development of coping skills, and about social inclusion, making it possible for people to have quality of life and a degree of independence and choice, even those with the most enduring and disabling conditions.7



The Parallels Between Person-Centred Care and ‘Recovery’


Person-centred care (PCC) is an approach which focuses on the needs of the person in the context of their life experience. It is liked, accepted and understood by old age practitioners and the majority find it a useful guiding framework when supporting older adults with mental health difficulties. It has origins in client-centred therapy and was described by Rogers as ‘…the releasing of an already existing capacity in a potentially competent individual’.8 Kitwood built on this understanding when he used the term person-centred in the context of dementia, applying the values and principles of humanistic psychotherapy to dementia.9


‘Recovery-focused practice’ (RFP) may be a less familiar concept to clinicians but there are striking similarities between it and a person-centred approach.


As Table 15.1 illustrates, both approaches are fundamentally about a set of values related to human living, applied to the pursuit of health and wellness. There is a strong emphasis on holistic care which is individualized and responsive to people’s needs, values and wishes. There is an expectation that people are treated with respect, dignity and compassion, and that they are genuinely involved in their care and treatment so that their strengths can be supported and goals can be identified and achieved. Both PCC and recovery would strongly endorse the emerging emphasis across the whole of health care on ‘personalization’ and are being widely adopted by health and social care services as a support for hope, purpose and direction for future services.




Table 15.1 Comparing recovery focused and person-centred approaches

























Recovery-focused practice (RFP) Person-centred care (PCC)
Recovery is fundamentally about a set of values related to human living applied to the pursuit of health and wellness A value base that asserts the absolute value of all human lives regardless of age or cognitive ability
The helping relationship between clinicians and patients moves away from being expert/patient to being ‘coaches’ or ‘partners’ on a journey of discovery The need to move beyond a focus on technical competence and to engage in authentic humanistic caring practices that embrace all forms of knowing and acting, in order to promote choice and partnership in care decision-making
Recovery is closely associated with social inclusion and being able to take on meaningful and satisfying roles in society People with dementia need an enriched environment which both compensates for their impairment and fosters opportunities for personal growth
People do not recover in isolation. Family and other supporters are often crucial to recovery and should be included as partners wherever possible Recognizes that all human life, including that of people with dementia, is grounded in relationships
Recovery approaches give positive value to cultural, religious, sexual and other forms of diversity as resources and supports for well-being and identity An individualized approach – valuing uniqueness. Accepting differences in culture, gender, temperament, lifestyle, outlook, beliefs, values, commitments, taste and interests

Hill L, Roberts G, Wildgoose J, Perkins R, Hahn S. Recovery and person-centred care in dementia: common purpose, common practice? Adv Psychiatr Treat 2010; 16: 288–298.

The similarities offer common ground and a common purpose for clinicians working to support people across the age spectrum. The old age practitioner will find value in understanding the recovery approach and those working with younger adults are increasingly looking to the principles of PCC to guide service development. There has been an emergent ambition to reset the whole of psychiatric practice on a foundation of PCC and an aspiration that our training curriculum, across all specialities, is revised accordingly such that it supports forms of practice that are ‘values-led, person centred and recovery focused’.10 It would seem the language describing the underlying principles can be used relatively interchangeably, but it is inaccurate to assume PCC and recovery are identical. PCC has evolved as, and remains, a professional-led approach to care. Recovery is about the individual’s personal experience, but those in professional roles can adopt a stance that attempts to support this journey of recovery for the individual – RFP. Despite different origins, the values described by Kitwood and those of a recovery approach invite clinicians to consider what is useful and necessary to support an individual on their journey through ill health. Atul Gawande, a US surgeon, captures this in his book Being Mortal where he battles with the ethical dilemma of medicine endlessly striving for cure at the expense of the individual’s quality of life.11 In the fourth of his 2014 Reith Lectures, ‘The Future of Medicine’, he said:



We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being – and well-being is ultimately about sustaining the reasons one wishes to be alive12



Key Aspects of Recovery with Implications for Person-Centred Care



Issues of Identity


The process of sustaining or developing a sense of self separate from the diagnosis and establishing a positive sense of personal identity is central to both RFP and PCC. There is a characteristic risk in severe illness and disabilities of all kinds that diagnosis eclipses an awareness of the person who has the problem in a context, providing an alternate and defining identity.


Kitwood has described being appalled by the misleading image of dementia as ‘death that leaves the body behind’ and the negative discourse used to describe people with dementia such as ‘victims’, ‘dements’ or ‘elderly mentally infirm’.9 He stated the time had come to recognize men and women with dementia in their full humanity describing the frame of reference as ‘PERSON-with-dementia’ rather than ‘person-with-DEMENTIA’. National charities have followed this lead, highlighting the importance of upholding an emphasis on the person rather than the disease to reduce the stigma experienced by so many. The Alzheimer’s Society was previously known as the Alzheimer’s Disease Society until 1999 when members voted to change the name.


Specific work exploring recovery in older people has also recognized the importance of identity. Daley et al performed ‘grounded theory analysis’ on interview data from people with dementia and other mental health problems to build a bottom-up framework for understanding the process of recovering a life with a diagnosis of dementia.13 They found recovery was connected to the extent to which the pre-existing sense of identity could be maintained or regained, that is, the experience of ‘continuing to be me’, which is integral to living well with dementia.14


Gaining or sustaining a secure sense of the identity of the people who become patients is potently supported by narrative approaches that are common to both recovery and PCC. Stories convey meaning, worries, hopes and ambitions and emphasize the importance of the individual journey of recovery. They form the foundation of reminiscence work, which is hugely valued by those working with people with dementia particularly as the illness progresses. Too often it has been assumed that people with dementia cannot speak for themselves but increasingly vocal groups of people with dementia have begun to emerge. Many of them have come together in the Dementia Engagement and Empowerment Project, which is discussed in greater detail towards the end of this chapter. People in prominent public positions have also challenged stigma, emphasized their own identity and raised awareness of mental health difficulties and diagnoses, for example popular author Terry Pratchett, best known for his satirical Discworld novels, disclosed his diagnosis of posterior cortical atrophy (PCA) in 2007.



Social Exclusion and the Need for Inclusion



No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were. Any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.


John Donne 1623, Meditation XVII, From Devotions upon Emergent Occasions

Donne’s iconic observation concerning our essential interconnectedness arose following his recovery from a time of severe illness which he thought he would not survive and which was accompanied by a painful sense of separation from his fellow man. This finds rich resonance in contemporary concerns over social inclusion and end-of-life care such as pioneered by the hospice movement, and the startling finding that many people with ‘severe mental illness’ consider their experience of social exclusion as worse than the struggles associated with their diagnosed condition.15


Traditional approaches to illness and treatment are almost exclusively focused on individual clinical variables such as symptom changes in response to drug or psychotherapeutic treatment, and virtually the whole of what we regard as ‘evidence’ is individualistic. In contrast both recovery and PCC reemphasize contextual and relational issues. Kitwood9 shares with Anthony5 advocacy for the central significance of a core emphasis on ‘personhood’, defining it as ‘a standing of status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.’ He acknowledged the particular difficulties in dementia care where declining mental powers challenge interconnectedness.


Involvement in local communities rather than segregated services is central to the recovery philosophy. Traditionally, people with severe mental illness were segregated, excluded and isolated. There has been increasing popular recognition that human connection and disconnection may be core mediating influences in the experience and outcome of illness and health. Participating in valued activities provides opportunity for social contact that is central to the health and well-being of people living with dementia. Perkins described a number of initiatives developed to reduce loneliness and isolation:14




  • Individual or one-to-one interventions such as befriending and mentoring.



  • Group services and networks – day centres, lunch clubs, dementia cafés, self-help groups.



  • Wider community engagement including a range of initiatives to increase participation in existing activities such as sport, libraries and museums.


The capacity to maintain connection to patterns of ordinary living, suitably customized to the extraordinary needs of people struggling with severe mental health challenges, may be a major mediator of ‘living well’.


Many alternative care settings based on the principles of PCC and recovery offer hope and potential for ordinary living in mainstream housing or suitable non-stigmatizing but supportive accommodation. There are national and international examples of specific housing for people with dementia and there is a drive to support people with dementia to remain living in their own homes with the community adapting to support them. Dementia-friendly communities encompass this ideal.16 There are five domains which need to be addressed as part of developing a dementia friendly community:




  • The physical environment (how easy it is and finding your way around)



  • The attitudes of the people with whom those living with a diagnosis of dementia come into contact



  • The resources available for support (formal and volunteer)



  • The networks (friends, relatives, neighbours, community leaders, local businesses)



  • The person with dementia and the message that it is possible to live well with dementia

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Sep 27, 2020 | Posted by in PSYCHIATRY | Comments Off on Chapter 15 – What Can Person-Centred Care in Dementia Learn from the Recovery Movement?
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