‘Continuing to be me’: Recovering a Life with a Diagnosis of Dementia’

‘Continuing to be me’: Recovering a Life with a Diagnosis of Dementia’

At first sight ideas about ‘recovery’ and ‘dementia’ may seem a contradiction in terms.  However, such discordance exists only if ‘recovery’ is seen in the clinical terms of ‘cure’.  Ideas about recovery emerged from the experience of people who themselves faced the challenge of living with mental health challenges and describe the process of rebuilding a meaningful, valued and satisfying life[i]. The process of recovery they described is not about ‘recovering from an illness’ but ‘recovering a life’: “a way of living a satisfying, hopeful and contributing life even within the limits caused by illness … a deeply personal, unique process recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of illness.” (Deegan, 1988)

Although initially developed in relation to younger adults living with mental health challenges, their relevance in relation to older people and those living with dementia is increasingly being recognised, initially by Bob Woods[ii] in 2007 and subsequently by people like Laura Hill and Stephanie Daley and their Colleagues[iii]. A diagnosis of dementia is, for most people and those who are close to them, a catastrophic and life-changing event: people living with dementia also face the challenge of living a meaningful, valued and contributing life.

Recovery is not a ‘model of care’, or something that services do to people.  It describes a personal journey of discovery: growing within and beyond what has happened and ‘living well’.  The question for services and supporters is whether they assist people in realising their possibilities.  Ideas about recovery challenge traditional ‘clinical approaches by replacing a focus on deficits, dysfunctions and problems with a focus on strengths and possibilities.  However, much work on recovery views the journey in purely individual terms.  This is a mistake[iv].  Recovery may be a personal journey, but it is not a journey travelled alone.  It is a journey travelled in the context of a family, a social network, a community, a culture, a place … all of which define the meaning of the diagnosis and the resources and possibilities for rebuilding a meaningful, valued and satisfying life.[v]

In this context the rights based approaches founded on a social model of disability[vi] that have developed in parallel with ideas about recovery are important.   Too often, within the prevailing clinical framework, people living with dementia are presented as ‘victims’ or ‘sufferers’ who are unable to speak for themselves, have little useful to contribute and are therefore denied a voice[vii].  We need to think about recovery in the context of a rights based approach rooted in a social model of disability: start from the perspective of people living with dementia as citizens with rights who are deserving of respect, and focus less on ‘care’ and more on ‘opportunity’ and the support/adjustments that people need to use their skills, do the things they value and be a valued part of our communities.  Such rights are recognised in the GB Equality Act and the United Nations Convention on the Rights of Persons with Disabilities, both of which explicitly include dementia.

The relevance of a rights based social model of dementia was first explicitly recognised by the English Care Services Improvement Partnership ‘National Older People’s Mental Health Programme’ in 2007[viii], but most importantly by the movement of people with a diagnosis of dementia themselves, including the work of the Dementia Policy Think Tank: “The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better”[ix].

 

Based on the voices of people living with dementia and those who are close to them, this ImROC Briefing Paper – ‘Continuing to be me’: Recovering a Life with a Diagnosis of Dementiaaims to draw together and extend ideas about recovery and rights into a practical, informative and radical publication that challenges prevailing narratives and assumptions around dementia. Based firmly within a rights based framework, it explores the devastating impact of diagnosis, the search for meaning and purpose involved in making sense of that experience, and developing strategies/support that enable people with the diagnosis to do the things they value, retain choice and control over their lives and participate as valued citizens.  The importance of fostering hope/living positively, personal control, opportunity and participation – and ways in which these might be fostered – are explored.

While many things may be important in enabling people living with dementia to recover/retain a valued, meaningful and satisfying life, this requires that we change the narratives surrounding the diagnosis. From ‘victims’ to be pitied and cared for to valued ‘citizens’ with rights: rights to a voice, rights to participate, rights to the support and adjustments they need to do so, rights to dignity and respect. From images of dementia as ‘living death’ to ‘life’.  Life changes, but life goes on and that life can be a good life.

Please click here to view the ‘Continuing to be Me’ report.

Rachel Perkins, January 2017

 

An ImROC Briefing Paper, Rachel Perkins, Laura Hill, Stephanie Daley, Mike Chappell and Jane Rennison, 2016

Available to download free: https://imroc.org/resources/12-continuing-recovering-life-diagnosis-dementia/

[i] Deegan, P. (1988) Recovery: The lived experience of rehabilitation, Psychosocial Rehabilitation Journal, 11: 11-19. Chamberlin, J. (1977) On Our Own, 1988 edn. London: Mind Publications. O’Hagan, M. (2014) Madness Made Me. Wellington, NZ: Open Box

[ii] Woods, R. (2007) Recovery—is it relevant to older people? Signposts.12 (1), 2-3

[iii] Hill, L., Roberts, G., Wildgoose, J., Perkins, R. & Hahn, S. (2010) Recovery and person-centred care in dementia: common purpose, common practice? Advances in Psychiatric Treatment, 10, 288-298. Daley, S., Newton, D., Slade, M., Murray, J. & Banerjee, S. (2013)   Development of a framework for recovery in older people with mental disorder, International Journal of Geriatric Psychiatry, 28, 522–529

[iv] O’Hagan, M. (2002) Living Well. Openmind 118, Nov/Dec,16-17

[v] Perkins, R. (2015) Recovery: a journey of the mind and spirit, Clinical Psychology Forum, Special Issue on Recovery, 268, 38-43. Repper, J. & Perkins, R. (2012) Recovery: A journey of Discovery for Individuals and Services, Chapter  in Phillips, P., Sandford, T. & Johnston, C. (eds.) Working in Mental Health: Practice and Policy in a Changing Environment. Oxford: Routledge

[vi] Oliver, M. (2004) If I had a hammer: the social model in action. In: J. Swain, S. French, C. Barnes and C. Thomas, (eds). Disabling Barriers – Enabling Environments. London: SAGE.

[vii] McGettrick, G. and Williamson, T. (2015) Dementia, rights and the social model of disability, London: Mental Health Foundation

[viii] Care Services Improvement Partnership (2007) Strengthening the Involvement of People with Dementia, London: CSIP Oder People’s Mental Health Programme

[ix] Hare, P. (2016) Our Dementia, Our Rights, Exeter: Dementia Policy Think Tank and Innovations in Dementia CIC

Rachel Perkins
Rachel worked in NHS services for 30 years: from clinical psychologist, to director.  She is now senior consultant with Implementing Recovery through Organisational Change (ImROC), Deputy Chair of the EHRC Disability Committee and editor of ‘Mental Health and Social Inclusion’.  In 2010 she received an OBE and was voted Mind Champion of the Year.
rachel.e.perkins1@btinternet.com

4 thoughts on “‘Continuing to be me’: Recovering a Life with a Diagnosis of Dementia’

  • The World Health Organisation also uses recovery in this way in developing modules for training professionals world-wide to adopt a human-rights based approach to mental health, including dementia. It’s good to see it so well explained here.

    • Thanks Peter, I’m glad you like it. I think it’s a fantastic paper.

      Philly Hare
  • Thanks Damian for highlighting you recent blog which perfectly complements this one about recovery

    Philly HarePhilly Hare

Leave a Reply

Leave a comment

Your email address will not be published. Required fields are marked *