The best books on personhood and dementia

Julian C. Hughes Author Of Thinking Through Dementia
By Julian C. Hughes

Who am I?

As an old age psychiatrist, I was naturally interested in dementia. But I’m also trained to doctoral level in philosophy. I’ve been both an honorary professor of philosophy of ageing (at Newcastle) and a professor of old age psychiatry (at Bristol). Whilst training in psychiatry at Oxford, I came across the work of Tom Kitwood. Subsequently, I’ve become great friends with Steve Sabat. His work and Kitwood’s brought home to me the complexity of personhood and its relevance to how we care for and think about people living with dementia. And the more you consider it, the more the notion of personhood broadens out to include citizenship and human rights.

I wrote...

Thinking Through Dementia

By Julian C. Hughes,

Book cover of Thinking Through Dementia

What is my book about?

Modestly, I don’t think there is another book that discusses dementia in such philosophical depth. Central to the discussion is personhood: what it is to be a person. The book looks at various models to understand dementia: as a biological disease, from a cognitive neuropsychological perspective, and in terms of social constructionism.

These models are useful and provide some insight into dementia (a term we should eradicate!); but they never tell the whole story, for which we need to turn to the human person perspective. The book is peppered with stories of fictional characters and artistic references to support the philosophy, which commends the broadest view of what it is to be a human being in the world. So, dementia teaches us about our own being.

The books I picked & why

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Dementia Reconsidered, Revisited: The Person Still Comes First

By Tom Kitwood, Dawn Brooker (editor),

Book cover of Dementia Reconsidered, Revisited: The Person Still Comes First

Why this book?

Kitwood’s seminal work was first published in 1997. This new edition, just over 20 years later, contains commentaries on each of Kitwood’s chapters to bring the work up to date. But, candidly, the original remains compelling. I gobbled it up, even if I disagreed with bits of it. It introduced me to the new culture of dementia care. It was refreshing, with its talk of a ‘malignant social psychology’, which is sadly still pervasive. It also introduced many people to Dementia Care Mapping, an observational technique now used all over the world to improve the care of people living with dementia. At the centre of Kitwood’s considerations was the importance of the person, seen as a psychosocial being, not simply a biomedical one. What a surprisingly revolutionary idea!

The Experience of Alzheimer's Disease: Life Through a Tangled Veil

By Steven R. Sabat,

Book cover of The Experience of Alzheimer's Disease: Life Through a Tangled Veil

Why this book?

Difficult for me not to gush about this book by my good friend! It is amazingly rich. It builds on Kitwood, introducing the idea of ‘malignant positioning’. It deepens Kitwood’s approach to personhood using William Stern’s notion of ‘Critical Personalism’. Steve sets out how, from a social constructionist standpoint, we can give different accounts of selfhood. He shows how these remain relevant even as dementia advances. The richness, for me, comes from the verbatim accounts of people with whom Steve worked closely over an extended period of time. Theory and reality come together. We get to know real people and see into the intricacies of their lives. The importance of the new culture of dementia care – where seeing the person as a psychosocial being is imperative – becomes utterly compelling. 

Broadening the Dementia Debate: Towards Social Citizenship

By Ruth Bartlett, Deborah O'Connor,

Book cover of Broadening the Dementia Debate: Towards Social Citizenship

Why this book?

Sabat deepened the work of Kitwood on personhood (or selfhood). These authors broaden it by showing how it integrates with the idea of citizenship. In my work, I’ve argued that as persons we are situated embodied agents. In a very exciting way, Bartlett and O’Connor show how people living with dementia are situated in a social and political context in which they can act as agents to bring about change. Indeed, since the book was written, increasingly we’ve seen this come to fruition. As noticed and predicted by these authors, people living with dementia do not have to be seen as ‘care recipients’, they can be (and are) activists, advocates, authors, artists, employees, friends, lovers, speakers, taxpayers, voters and a lot more besides. Social citizenship is an irresistible idea. 

Dementia and Human Rights

By Suzanne Cahill,

Book cover of Dementia and Human Rights

Why this book?

I doubt it’s a mere coincidence that Cahill’s book has the same publisher as the Bartlett and O’Connor book and that it has a Foreword by Sabat. For there is a movement afoot towards broadening the way we see people living with dementia: not simply as biological beings, not solely as psychosocial, not just as citizens in the polis, but now as the bearers of rights. Because, personhood entails that people living with dementia are situated in the legal field as well as the political, and so on. Building on the work of disability rights campaigners, the case for including dementia within the purview of the United Nations Convention on the Rights of Persons with Disabilities is given trenchant support. Moreover, Suzanne conveys the urgency of this human rights perspective.

Popularizing Dementia: Public Expressions and Representations of Forgetfulness

By Aagje Swinnen (editor), Mark Schweda (editor),

Book cover of Popularizing Dementia: Public Expressions and Representations of Forgetfulness

Why this book?

To be honest, I might have overlooked this book had I not had the good fortune to meet Mark, one of its editors, at various very enjoyable academic events in Europe – made exciting by Mark’s incisive contributions. The book exemplifies the movement I have previously gestured at. The broadening effect here is achieved by situating dementia as a cultural phenomenon. How is dementia represented in popular culture: in fiction, in art, film, the media, and so forth? More importantly, how are we to understand and what sort of critiques can be applied to the narratives that emerge from these cultural representations and expressions? There is much to be gained from approaching dementia from an aesthetic viewpoint. The variety of topics in this book and their treatment is refreshing and incredibly stimulating.

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We think you will like Creative Care: A Revolutionary Approach to Dementia and Elder Care, The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss, and The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias if you like this list.