100 Books Like Popularizing Dementia

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!

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. 

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. 

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.

The title poem in this collection, (made from lines spoken by the poet’s mother,) manages to embody both caregiver and loved one as Constantine gives gentle structure to a string of seemingly disconnected utterances. Each poem in the book explores themes of loss, memory, and family through a different lens, creating an almost kaleidoscopic vision of the world. The collection is a rumination, a celebration, and a beautiful example of how poetry can expand our perspectives and teach us to speak and hear new rhythms.  

Sticky Notes centers on a parent who has early-onset Alzheimer’s and is told from the perspective of a 10-year-old boy, Foster. The voice is a genuine one and the writing is heartfelt, as Foster compares his own forgetting to Dad’s forgetting and sometimes convinces himself that there is no need to worry. The confusion and lack of clear discussion with Foster about what is happening is a real challenge for many dealing with the disease. As the forgetting gets worse and Dad begins to change, Touchell documents the family changes that Foster and his mother go through too, with a sensitive touch. 

What struck me most about this story was the sheer drama and miracle of its opening scene.

A nineteen-year-old boy stands on a bridge in the pouring rain, ready to end his life. An old woman's voice cuts through the storm and saves him. That moment stunned me.

The idea that someone living inside the fog of dementia could pierce through a young man's darkness felt like a small miracle. And as the two fall into a strange, tender daily rhythm, each giving the other exactly what they lack, their unlikely friendship becomes even more extraordinary.

It moved me because it shows how grace can arrive from the most unexpected places and how two broken lives can heal each other. 

This book attracted me because, as a gerontologist/social worker, I’m interested in the subject of Alzheimer’s disease (AD) and dementia. This book, rather than describing the long, sad decline of a loved one, tells Bloom’s story of trying to help her spouse with AD to end his life.

Bloom is a clinical social worker who writes with a deep understanding of human behavior and motivation, most notably her own, which makes her a fine memoirist. She writes candidly about her emotions, unafraid to reveal less flattering details.

Her story is a sad one, with many ups and downs, but the overwhelming sense I got was of her powerful love for her husband and desire to give him what he needed in the face of his dementia diagnosis.

When Stephen announces he’s getting remarried, his adult daughters aren’t happy with the news. His fiancé is too young, she’s a gold digger, and let’s not forget the fact he's still legally married to their mother, his first wife, now in a care facility for dementia. But Stephen doesn’t see it as a problem; he’s already initiated the divorce. Sally Hepworth is a genius at developing compelling, well-rounded characters, ones with real secrets and problems you root for them to solve. And marriages don’t get much more messed up than this one.

Janet Ramsey’s experiences as a chaplain, therapist, and family caregiver have taught her that people living with dementia deeply desire interactions with others that uphold their dignity and offer them love and forgiveness. She interviewed many dementia caregivers and throughout the book, she lets them express what dignity and grace mean in their everyday interactions with loved ones. Each chapter concludes with a reflection on a different Psalm, reflections that speak directly to the challenges and opportunities for growth that come with caregiving. Readers need not be Christian or in any way religious to appreciate the warmth and humanity conveyed throughout this book.