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Me and my life: Identity, human rights and dementia

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Dr. Sarah Butchard and Professor Peter Kinderman share their thoughts on caring for those with dementia. 

sarah butchard

Dr Sarah Butchard

peter kinderman

Professor Peter Kinderman

And this, essentially, includes protecting and promoting our fundamental human rights.The ultimate aim for most researchers is to find a cure for all forms of dementia. But, even if we were to find a cure tomorrow, we have an urgent and moral case to improve the care for those of us currently living with Alzheimer’s Disease and other forms of dementia.

We were delighted to receive support from the UK’s National Institute for Health Research to investigate the effectiveness of training in human rights for front-line care staff.

A useful way to think about our rights in practice is to consider the FREDA principles – of Fairness, Respect, Equality, Dignity and Autonomy. Our work (soon to be published) also revealed that “identity” is a particular and important aspect of human rights in dementia.

Our research collaborators living with dementia asserted that, as they adjusted to living with dementia, it was important to them that their identities, choices, personality, lifestyles and preferences, were protected and respected.

We may need help with our memories, with mobility, with the activities of daily living, with reading and writing, even with recognising loved-ones. But our research collaborators stressed how important it was to them to be confident that their essential identity, and how other people treat them, must be protected, even as we need the help of others.

“Our research collaborators living with dementia asserted it was important to them that their identities were protected and respected.”

This unfortunately means that we are often placed in circumstances where our fundamental rights are under even greater threat. Unfortunately, we still hear stories of people in dementia care services who are abused or assaulted.As one colleague put it; “as the disease progresses, my needs might change, but that doesn’t change who I am”. As we protect each other’s rights, in dementia care, we need to respect the FRIEDA principles. As dementia progresses, our needs often grow, and we have greater reliance on daily care.

The law – whether we are talking about assault or about the Human Rights Act or the United Nations Convention on the Rights of Persons with Disabilities – should protect us.

But these legal protections are also underpinned and supported both by good practice on the part of the caring professions and on the attitudes and values of the general public.

One of our colleague’s personal stories (which he has asked us to share) illustrates this. After three frustrating years of inaction, he again wrote to his housing association, pointing out that his particular disabilities were hidden, often stigmatised, but nevertheless requiring as much ‘reasonable adjustment’ as any other condition.

He, particularly on this occasion, stressed the human rights aspects of his case (much to our delight, as a direct result of his involvement in our research) emphasising how appropriate accommodation was essential to maintaining his right to live his life in the manner of his choosing.

“How can we best ensure our practices are fair? How do we protect and promote respect? Are our services equitable?”

He won his case. For all of us, whether living with dementia or entering so-called ‘normal’ old age, World Alzheimer’s awareness month offers us an opportunity to think about how society can protect our rights. For us, this means using the FRIEDA principles to guide our thinking.

How can we best ensure our practices are fair? How do we protect and promote respect? Are our services equitable? Are we doing all we can to ensure that people maintain their dignity, even in the face of inevitably undignified demands of care?

Are we confident that our decisions are ones which maintain and promote, as far as is possible, the autonomy of those people who use our services?

And, in the light of our experiences, are we doing all we can to help people maintain their identity, their sense of who they are, and the knowledge of who they are in the minds of all who know them, even as dementia places practical demands on their lives?

Click here for more from the NIHR 

Dr Sarah Butchard is a senior clinical psychologist with Mersey Care NHS Foundation Trust, where she works with people living with dementia. Dr Butchard is also Senior Clinical Teacher on the University of Liverpool’s doctoral programme in clinical psychology.

Peter Kinderman is Professor of Clinical Psychology at the University of Liverpool, an honorary Consultant Clinical Psychologist with Mersey Care NHS Trust, and former President of the British Psychological Society. His research interests are in psychological processes as mediators between biological, social and circumstantial factors in mental health and wellbeing. His most recent book, ‘A Prescription for Psychiatry’, presents his vision for the future of mental health services. You can follow him on Twitter as @peterkinderman. 

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