Origins

According to Reference Roberts, Wolfson, Roberts, Davenport and HollowayRoberts & Wolfson (2006) the recovery philosophy as applied to mental healthcare can be traced back to William Tuke, a Quaker and lay reformer who established The Retreat in York at the turn of the 18th century and demonstrated the benefits of a family-like healing environment based on kindness, respect and a personalised therapeutic approach. The more recent history of person-centred care has its origins in client-centred therapy, described by Rogers as ‘the releasing of an already existing capacity in a potentially competent individual’ (1951) and with an emphasis on genuineness, unconditional positive regard and empathic understanding. Reference KitwoodKitwood (1997) built on this understanding when he used the term ‘person-centred’ in the context of dementia care, thus making a leap comparable to that made by Tuke by applying the values and principles of humanistic psychotherapy to dementia.

Both philosophies have gathered momentum over the past 10 years through the advocacy and writings of people who have used mental health services (Reference BiernackiBiernacki 2007; Care Services Improvement Partnership 2007). This increasingly includes people in prominent public positions ‘coming out’, for example Mike Shooter, a past President of the College, describing his experience of severe depression in the pages of this journal (Reference Roberts and WolfsonRoberts 2004), and popular author Terry Pratchett, best known for his satirical Discworld novels, disclosing his diagnosis of Alzheimer's disease in 2007.

Identity

The process of sustaining or developing a sense of self separate from a diagnosis of mental illness and establishing a positive sense of personal identity is central to both recovery-oriented practice and person-centred care. There is a characteristic risk in severe illness and disabilities of all kinds that they eclipse an awareness of the person who has the problem and provide an alternative and defining identity.

Reference KitwoodKitwood (1997) 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’. He stated that the time has come to recognise men and women with dementia in their full humanity, describing the frame of reference as ‘PERSON-with-dementia’ rather than ‘person-with-DEMENTIA’. This is mirrored by changes in adult psychiatry with a shifting emphasis on schizophrenia.

There has also been a sustained effort to correct media representations that conflate people with the diagnosis of their condition, specifically seeking to challenge dehumanising descriptions of people as ‘schizophrenics’, ‘manic depressives’, ‘PDs’ or worse.

National charities have also emphasised the importance of upholding an emphasis on the person rather than the disease as a means of reducing the stigma experienced by so many.Footnote † The Alzheimer's Society was known as the Alzheimer's Disease Society until 1999, when members voted to change the name. Similarly, the National Schizophrenia Fellowship changed its name to Rethink in 2002 following consultation that identified schizophrenia as a stigmatising diagnosis and a barrier to the charity offering hope and empowerment to people with severe mental illness.

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 person-centred care. Stories convey meaning, worries, hopes and ambitions and emphasise the importance of the individual journey of recovery, as this journal has previously investigated (Reference RobertsRoberts 2000). They also form the foundation of reminiscence work (Reference KitwoodKitwood 1997).

Social inclusion

Donne's famous observation (Box 4) concerning our essential interconnectedness arose following his recovery from a time of severe illness that he thought he would not survive and that was accompanied by a painful sense of separation from his fellow men. This finds rich resonance in contemporary concerns about social inclusion and about changes to end-of-life care (Department of Health 2008a) such as those pioneered by the hospice movement.

Traditional approaches to illness and treatment are almost exclusively focused on individual variables such as symptom changes in response to drug or psychotherapeutic treatment, and virtually the whole of what is regarded as ‘evidence’ is individualistic. By contrast, both recovery (Care Services Improvement Partnership 2007) and person-centred care (Reference BrookerBrooker 2007) re-emphasise contextual and relational issues. Kitwood identified the importance of maintaining ‘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’ (Reference KitwoodKitwood 1997: p. 8). 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 (Reference Shepherd, Boardman and SladeShepherd 2008) and meaningful occupation is seen as a major route to recovering an ordinary life (College of Occupational Therapists 2006; Reference Perkins, Roberts, Davenport and HollowayPerkins 2006). Sustaining realistic goals with shifting expectations is key in dementia care and although tasks may become more modest or mundane they can still minimise the boredom and lethargy that is experienced by many people with dementia (Reference SheardSheard 2008).

Traditionally people with severe mental illness have been cared for through segregation, exclusion and isolation. There are striking links between the work of Reference KitwoodKitwood (1997) and that of Reference GoffmanGoffman (1974), who looked at the social-psychological processes to which patients were subjected in mental hospitals. The modernising agenda has been to close the asylums, but by merely doing things in the community rather than with the community it has so far failed to deliver genuine community care.

Many alternative care settings based on the principles of person-centred care and recovery offer hope and potential for ordinary living in mainstream housing (Care Services Improvement Partnership 2007) or suitable non-stigmatising but supportive accommodation. In Northern Ireland for example, person-centred approaches have driven the design of specific housing to give people with dementia the opportunity to continue living independently with assistive technology and community support to minimise and manage risk (Belfast Health and Social Care Trust 2002).

Co-working

Recovery approaches recontextualise professional helpers as mentors, coaches, supporters, advocates and ambassadors (Care Services Improvement Partnership 2007) with an operational stance of being ‘on tap not on top’ (Reference Shepherd, Boardman and SladeShepherd 2008). This shift towards co-working is mirrored in person-centred care, where clinicians attempt to understand the world from the perspective of the person with dementia and to respect that perspective (Reference BrookerBrooker 2007), promoting choice and partnership in care decision-making (Reference McCormackMcCormack 2004).

The co-working role is equally applicable for informal carers, who almost universally struggle with their experiences and altered expectations. Reference KillickKillick (1999) underlined the risk that carers become overprotective because of the history of their relationship with the person. Yet frequently it is only the carers who understand the person and retain an awareness of their life and story. The College has emphasised the importance of this role through its campaign ‘Partners in care’ (www.rcpsych.ac.uk/campaigns/partnersincare.aspx). Similarly, in her book Dancing with Dementia Christine Reference BrydenBryden (2005) writes about her personal experience of living with a diagnosis of dementia and adopts the term ‘care partner’.

There is also increasing emphasis on the development of peer-supportive relationships between people with lived experience of mental health problems and services (Reference Corrigan, Mueser and BondCorrigan 2008). At their best these are based on a mutual understanding of the difficulties faced and a shared commitment to learn and grow (Reference Copeland and MeadCopeland 2004). Recovery and person-centred approaches value these relationships and recognise the benefits of self-help groups such as the Hearing Voices Network (www.hearing-voices.org) or those offered for people newly diagnosed with dementia (Reference Harris and MarshallHarris 2005).

Self-care and self-management

Supporting people to look after themselves is a key component of the NHS Improvement Plan's vision for a patient-centred care system (Reference CaytonCayton 2007), which was introduced following recognition that self-management can reduce severity of symptoms and improve life control and satisfaction.

Recovery approaches place value on all aspects of self-management. The most widely accepted and utilised tool is the Wellness Recovery Action Plan (WRAP; Reference CopelandCopeland 2005), a structured framework for coping with mental illness. There are parallels in person-centred care with the Mental Capacity Act 2005 (Department of Health 2005a) and provision for advance statementsFootnote ‡ that recognise that it is essential to understand the preferences of people with dementia so that decisions can be made on their behalf when they become incapable. The National Dementia Strategy (Department of Health 2008b) and Alzheimer's Society emphasise the importance of early diagnosis to allow people to plan for their future but this does not release the clinician from the obligation of responding to and trying to make sense of preferences expressed non-verbally, for example through behavioural disturbance, in later stages of the illness.

Maintaining hope

The reality of both severe mental illness and progressive dementia are often such as to defeat hope. Holding hope in such circumstances may seem naive or mistaken and thus a challenge to clinicians trying to uphold recovery or person-centred values in older people's services.

Alzheimer's disease and other dementias are progressive disorders and, regardless of quality of care, people with the disease are likely to decline over time across all dimensions of living. The inevitability of this decline can make it difficult for staff to see their actions as therapeutic (Reference MarshallMarshall 2001). The human tendency in circumstances where cure is unachievable is to ignore or deny the difficulties, exacerbating the individual's sense of alienation and distance from society. However, the universal observation of the placebo effect, even improving neurocognitive performance in dementia (Reference ElkanElkan 2008), continues to demonstrate the sensitivity of such long-term conditions to hope and belief.

Developing an awareness of recovery principles enables clinicians to be more in tune with the experiential reality of living with dementia. They can become more intimately connected with the person and the changing realities of their existence, leading to genuinely person-centred care. They can also get alongside carers, understanding their feelings of sadness and despair, prompting more rewarding conversations. The paradox of recovery and person-centred care is to value the enhanced sense of intimacy that such personal approaches permit so as to remain in touch with the losses and face the full tragedy of the illness but also to find hope and sustenance in the quality of the interaction and connection.

Risk, choice and responsibility

Recovery and person-centred approaches emphasise the importance of empowerment and handing back control and authority to the individual. The College's guidance emphasises that ‘risk management must recognise and promote the patient's strengths and should support recovery’ (Royal College of Psychiatrists 2008a). This is increasingly compatible with Deegan's requests that professionals ‘embrace the concept of the dignity of risk and the right to failure if they are to be supportive’ (Reference DeeganDeegan 1996). Yet general adult and old age psychiatrists often find themselves in a position where they have a responsibility to deny people freedom of choice by imposing compulsory care and treatment in the service of safety.

There have been differing perspectives on this from people who use mental health services and their advocates. Some assert that there can be no recovery as long as people are detained against their will and subject to force, others that there should be no ‘recovery-free zones’ in mental health services. Reference Roberts, Dorkins and WooldridgeRoberts et al (2008), exploring this dilemma in Advances, developed a view that compulsory care and treatment, when needed, are compatible with a recovery-oriented approach.

Person-centred approaches adopt a similar pragmatic stance. Acknowledgement of the ‘Bournewood gap’, where people with dementia have been detained de facto but without a legal framework to appeal (Department of Health 2005b), has been an important step. In institutional settings where freedom and personal choice can be heavily constrained, small choices may produce a disproportionately large contribution to well-being (Reference Roberts, Dorkins and WooldridgeRoberts 2008) and there is evidence that people can make reliable decisions about long-held preferences well into their dementia (Reference BrookerBrooker 2007).

Paradoxically, in circumstances of incapacity (Reference Church and WattsChurch 2007) a high degree of restriction may be more supportive of recovery and personhood than leaving people to ‘rot with their rights on’ (Reference Davidson, O'Connell and TondoraDavidson 2006). Leave restrictions and detention provide boundaries to support safety planning and choice in keeping with premorbid preferences. Technological advances such as electronic tagging for people with dementia have provoked much debate but potentially offer increased freedom, independence and dignity, and reduce the worry of carers (Alzheimer's Society 2007).

Cultural shift

Disconnected or isolated change will have little impact. Person-centred care, like recovery-based practice, requires a ‘whole systems’ approach (Reference McMurdo and WithamMcMurdo 2007), delivered or facilitated by staff on the ground, through the clinical and managerial hierarchy to service planning, finance and administration at an organisational level (Reference Baker, Edwards and PackerBaker 2003b). Few would argue against recovery and person-centred philosophies in principle but changing years of ingrained practice poses a challenge to policy advisors, managers and clinicians. In addition, organisational, environmental or societal obstacles can leave staff or carers feeling helpless (Reference Baker, Edwards and PackerBaker 2003b).

Some people who have used mental health services who would define themselves as survivors of psychiatry or activists have expressed concern over ownership of the recovery approach. They resist invitations to engage in collaboration and co-working, preferring instead to talk of colonisation of their recovery by professionals (Mind 2008). In its Fair Deal for Mental Health campaign (Box 5) the College has called for ‘recovery to become a better understood and accepted approach across all mental health specialties’ (Royal College of Psychiatrists 2008b: p. 27). Yet if this is really to happen, it will need to be developed in partnership with the people who use mental health services. It is perhaps encouraging that the renewed ‘service user’ group in the College is called the ‘Service User Recovery Forum’ (SURF), and the aspiration of the Future Vision Coalition (2008) includes asking for the ‘full adoption of the “recovery approach” across the full spectrum of care’.

Some of the misunderstanding over use or adoption of the word ‘recovery’ has parallels in person-centred care, where the word ‘care’ suggests paternalism, which can result in confusion for staff regarding their role (Reference SheardSheard 2008). Neither recovery nor person-centred care should be thought of as a new thing ‘to do’ to others; they emphasise instead how ‘to be’ person-centred or recovery-oriented.

Superficial or tokenistic engagement is a common pitfall in recovery and person-centred working. There is justifiable anger and critique from service users and staff alike if the transformation is no deeper than changing the name of the service and printing new stationery. Claiming that computerised pre-prepared care plans are individualised through the addition of the person's name at the top of the form is contemptible and colludes with depersonalisation while appearing not to (Reference Baker, Edwards and PackerBaker 2003a). Genuinely to pursue the values, practices, principles and standards of both recovery and person-centred care is a challenge for all involved and one met all the better for doing so in partnership with the people who use mental health services and their families.

Innovations

Person-centred approaches challenge the historical practice of treating behavioural and psychological symptoms of dementia with antipsychotics. An independent report commissioned by the Department of Health concludes that ‘the use of these drugs in those with dementia has substantial clinical risk attached, including a conservative estimate of 1,800 extra deaths and 820 extra serious adverse events such as stroke per year’ (Reference BanerjeeBanerjee 2009: p. 58). Alternative psychological approaches driven by person-centred care principles are increasingly recognised. An innovative example is that of Penny Garner's experience of caring for her own mother, which led to the development of a specific interpersonal approach. This not only supports and promotes well-being but may enable less use of medication the role of which is to suppress the distressing confusion, fear and anger often accompanying progressive dementia. Garner's Specialised Early Care for Alzheimer's (SPECAL) (www.specal.co.uk; Reference JamesJames 2008a) focuses on carefully shaped personal interactions that assume the individual is making sense of present experiences through past memories. Her approach is based on three guiding principles that aim to de-escalate the fear and to offer instead a platform for a more contented experience of life and well-being, even in the context of advancing dementia (Box 6).

This lends itself to what initially appear to be collusive and unethical interactions, but Reference JamesJames (2008a) argues the opposite by asserting that experiential well-being, even if based on the contentment of past roles or experiences, is of higher value than endlessly irreconcilable disputes over present truth. The SPECAL approach takes this further by also seeking to see through apparently ‘mad’ or ‘delusional’ assertions. It helps people make sense of their bewilderment by matching current cues to past experiences rather than insisting on the ungraspable present.

This has achieved publicity and popular recognition because again it portrays the preservation of valued human contact as a support of humane care and treatment. It also holds hope for both carers and people who have the disease, who speak of the dual benefits of feeling empowered by knowing how to interact more successfully and relieved at the consequent benefits to the well-being and contentment of their relatives (Reference JamesJames 2008b)

Creative and artistic expression in all its forms is virtually absent from evidence-based guidelines for all disorders. Stories from people in recovery are full of creative, expressive and artistic endeavours (Reference LeibrichLeibrich 1999), from poetry, painting and music to gardening, craft activities, home-making and care of pets and other animals – a moment's self-reflection underlines for all of us what it is that constitutes our quality of life and supports our hope in living. There is little emphasis on any of this in standard texts on severe mental illness in any age group but both are substantially emphasised in recovery and person-centred approaches, leading to significant improvements in quality of life (Box 7).

End-of-life care also improves with input from person-centred care and recovery. The end of life care strategy (Department of Health 2008a) promotes a change of practice and culture that seeks to sustain a person-centred approach until death. It recognises that it is at death we part, yet pessimism, isolation, alienation and detachment which can result from severe illness in older people can create a premature separation and extinction of hope and connection. Indeed, we are more familiar with the idea that death occurs as a failure of treatment. This is supported by Reference RileyRiley's (2008) observation that ‘medical professionals like to think that they give patients control but this impression is countered by evidence that patients do not die where they would prefer to’. The majority of people say they would like to die at home but at present nearly 60% of the 500 000 people who die in England each year do so in hospital (Department of Health 2008a). Riley proposes a cultural shift towards seeing dying as part of living and supports the person-centred approach within the new strategy that promotes choice, improved openness, communication and information to enable advanced directives to be constructed and a care pathway response that includes death rather than one that stops just short of it.

The gradual inclusion of person-centred care and recovery principles in policy design, service provision and informal care is encouraging. Various organisations are also embracing the principles (Social Care Institute for Excellence 2006; Age Concern 2007) and pilots in several trusts (Devon Partnership Trust, South West London and St George's) are exploring the applicability of recovery-oriented approaches to older people's mental health (Box 8).

Outcome measurement

There is a broad shift across the whole of medicine towards an interest in outcomes rather than activity. Patients, carers and commissioners all share an interest in health and well-being rather than treatment and care. Traditionally, measures for all age groups have focused on documenting disability and measuring shifts in symptoms and service usage over time.

More useful and enlightened measures that are sensitive to people's experience of both their health problems and mental health services have grown out of recovery and person-centred care. Dementia care mapping is a well-recognised method for evaluating care through formal observation and was described by Reference KitwoodKitwood (1997) as a serious attempt to take the standpoint of the person with dementia. The Commission for Social Care Inspection (2008) has worked with the University of Bradford to understand dementia care mapping and create the Short Observational Framework for Inspection for use in care homes. This is a tool for capturing the experience of care of people who would otherwise be unable to communicate this to an inspector. The Short Observational Framework for Inspection, like dementia care mapping, is based on person-centred approaches to care, evaluating the mood and engagement of people using services and staff communications that undermine or enhance a person's sense of well-being. In addition, there is a move towards promoting active participation of older people in service evaluation and development, with work by the Care Services Improvement Partnership Older People's Mental Health Programme (2007) and the Partnerships for Older People Projects (Department of Health 2008c).

Recovery has a long-standing tradition of recognising the importance of user-led evaluation and input. The Developing Recovery Enhancing Environments Measures (DREEM; Reference Dinniss, Roberts and HubbardDinniss 2007) is one of an emerging group of personal, practice and organisational measures that enable people who use mental health services to reflect on their own recovery and give feedback to the service.

A focus on quality of life rather than symptom resolution can highlight unexpected but important experiences. There is a non-linear relationship between memory loss and well-being, and subjective life satisfaction can improve with advancing dementia (Reference Jetten, Haslam and PuglieseJetten 2010). Likewise, some people with long-standing systematised delusional beliefs find an enhanced sense of meaning and purpose in life (Reference RobertsRoberts 1991).