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.

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The books I picked & why

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

Why did I love 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!

By Tom Kitwood, Dawn Brooker (editor),

Why should I read it?

1 author picked Dementia Reconsidered, Revisited as one of their favorite books, and they share why you should read it.

What is this book about?

The original Dementia Reconsidered: The Person Comes First by Tom Kitwood was published by Open University Press in 1997. It was a seminal text in the field of dementia studies and is still cited and referenced as core reading on person-centred dementia care. Tom died unexpectedly, just 12 months after the book was published. This book continues to inspire many people to challenge simplistic paradigms about dementia. Since the original book was written, however, there have been many changes in our understanding of dementia.

The editor of this new edition, Dawn Brooker was mentored by Tom Kitwood. She has drawn…

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

Why did I love 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. 

By Steven R. Sabat,

Why should I read it?

1 author picked The Experience of Alzheimer's Disease as one of their favorite books, and they share why you should read it.

What is this book about?

At a time when the incidence of Alzheimera s Disease is increasing dramatically, this accessible account revolutionises our stereotypes of Alzheimera s patients and their care.

Book cover of Broadening the Dementia Debate: Towards Social Citizenship

Why did I love 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. 

By Ruth Bartlett, Deborah O'Connor,

Why should I read it?

1 author picked Broadening the Dementia Debate as one of their favorite books, and they share why you should read it.

What is this book about?

Dementia has been widely debated from the perspectives of biomedicine and social psychology. This book broadens the debate to consider the experiences of men and women with dementia from a sociopolitical perspective. It brings to the fore the concept of social citizenship, exploring what it means within the context of dementia and using it to re-examine the issue of rights, status(es), and participation. Most importantly, the book offers fresh and practical insights into how a citizenship framework can be applied in practice. It will be of interest to health and social care professionals, policy makers, academics and researchers and people…

Dementia and Human Rights

By Suzanne Cahill,

Book cover of Dementia and Human Rights

Why did I love 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.

By Suzanne Cahill,

Why should I read it?

1 author picked Dementia and Human Rights as one of their favorite books, and they share why you should read it.

What is this book about?

The time has come to further challenge biomedical and clinical thinking about dementia, which has for so long underpinned policy and practice. Framing dementia as a disability, this book takes a rights-based approach to expand the debate.
Applying a social constructionist lens, it builds on earlier critical perspectives by bringing together concepts including disability, social inclusion, personhood, equality, participation, dignity, empowerment, autonomy and solidarity. Launching the debate into new and exciting territory, the book argues that people living with dementia come within the UN Convention on the Rights of Persons with Disabilities and therefore have full entitlement to all the…

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

Why did I love 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.

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

Why should I read it?

1 author picked Popularizing Dementia as one of their favorite books, and they share why you should read it.

What is this book about?

How are individual and social ideas of late-onset dementia shaped and negotiated in film, literature, the arts, and the media? And how can the symbolic forms provided by popular culture be adopted and transformed by those affected in order to express their own perspectives? This international and interdisciplinary volume summarizes central current research trends and opens new theoretical and empirical perspectives on dementia in popular culture. It includes contributions by internationally renowned scholars from the humanities, social and cultural gerontology, age(ing) studies, cultural studies, philosophy, and bioethics. Contributions by Lucy Burke, Marlene Goldman, Annette Leibing and others.

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