12. ‘Continuing to be me’ – Recovering a life with a Diagnosis of Dementia

Traditionally, recovery concepts: hope, control and opportunity, have been considered through the lens of younger adults. ‘Continuing to be me’ – Recovering a life with a Diagnosis of Dementia is a practical and useful guide that re frames the perception of how people with dementia can continue to live meaningful and fulfilling lives. Recovery is relevant to people with dementia.

Receiving a diagnosis of dementia can have an overwhelming impact. The paper sets out a framework for understanding the personal journey of recovery with a diagnosis of dementia; from identity, impact of diagnosis, making sense of their experience to coping strategies and ways to live well.

Person-centred care and recovery-orientated practice offer possibilities for cross fertilisation of ideas and learnings. Values underpinning the principles are complementary not contradictory. Principles hold similarities through relationships and collaborative partnerships, opportunities for meaningful roles and personal growth, and viewing diversity and uniqueness as an asset and a strength.

‘Continuing to be me’ – Recovering a life with a Diagnosis of Dementia was launched at ImROC training events facilitated by Dr Rachel Perkins on Central and North West London NHS Foundation Trust Older People’s wards on 30 September 2016. ImROC works with services, systems and communities to translate the guidance from its briefing papers into local practice and experience. Through facilitation, local planning and implementation the concepts and ambitions of the briefing papers can be put in to practice.

Co-authors of the briefing paper say:

 “If you are in any doubt that it’s possible to live well with dementia, read this.  Research into causes and potential cures is great, but the effect of changing our attitudes to dementia, could be greater still.”

 Mike Chappell, Compass Worker Lead, Mental Health Services for Older People, Nottinghamshire Healthcare NHS Foundation Trust

 “One of the hardest parts of my job is telling people they have dementia. I long for the day when the fear following diagnosis can be replaced with hope. It’s not easy living with dementia but it is possible to live well and achieve goals.  I hope this paper will be the first step on a journey to rethinking what it means to have dementia. It is a stimulating and inspiring read for people with dementia, their family and friends and health care professionals.”

Laura Hill, Consultant Psychiatrist, Older People’s Mental Health, Devon Partnership NHS Trust

 “A practical, informative and radical paper that challenges prevailing assumptions and narratives of dementia.  From ‘living death’ to ‘living well’, from ‘victims’ to be pitied to ‘citizens’ with rights who can and should speak for themselves.”

 Rachel E. Perkins BA, MPhil (Clinical Psychology), PhD, OBE, Senior Consultant,  ImROC, Co-editor of ‘Mental Health and Social Inclusion’ Journal, Deputy Chair, Equality and Human Rights Commission Disability Committee

 “Recovering & discovering a life with dementia  – for the individual, those around them & those supporting them – is so  much more than making sense of facts and information that is readily available.

This briefing draws on the invaluable personal experiences of those who can inform,  guide and inspire all concerned; to ensure those who receive a diagnosis of some form of dementia can ‘continue to be me’ and remain valued, participatory citizens; & who will continue to help shape services.”

 Jane Rennison, Trust Head of OT & Recovery Lead, Central & North West London NHS Foundation Trust

 “We know that  from talking to people with dementia and their carers that the principles which underpin the concept of recovery do have meaning and resonance with them. People with dementia want to remain in the driving seat of their own life, and to continue to do things which give life purpose and re-enforce a sense of who they are. Recovery-oriented practice is equally important for dementia services, even if the language is problematic, this briefing is intended to help services to think about how they can apply these principles in practice.”

 Dr Stephanie Daley, Clinical Research Fellow, Centre for Dementia Studies, Brighton and Sussex Medical School

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