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.

Drowse Draaisma is a memory specialist, and this lucid, eloquent and humorous book celebrates the rich and fruitful pleasures of memory in later life (and takes the sting out of the natural forgetfulness that comes as we grow older). It combines science, psychology, anecdotes, advice, and it is above all a work of spirit and optimism.  

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. 

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.

This sensitive, charming book shows how a child learns about what is going on in her granny’s brain.

It addresses the emotions that a young child may feel when they witness confusing changes in a loved one’s behavior. This story provides a wonderful opportunity to discuss dementia and what to do if a child has concerns or questions. 

Ice Cream with Grandpa is about the love between a child and his Grandpa.

The child tells the story beginning with the first time his Grandpa gave him ice cream. Their love of ice cream bonds them, but they also enjoy gardening, and walks in the park. When Grandpa moves to an apartment, it took some adjustment. What helped was the ice cream parlor nearby. Grandpa eventually goes into a memory care home.

The child fears Grandpa won’t remember him. His mom explains that Grandpa is still Grandpa. They can still enjoy spending time together. On Grandpa’s last day in hospice, they eat ice cream. Grandpa passes, but the child continues to remember their love each time he eats ice cream.

This story moved me so much that I cried. I love that this book includes a Guide for Parents and Caregivers: Tips for Talking with Children about Dementia, Hospice,… show more.

I can’t even imagine having both parents diagnosed with Alzheimer’s on the same day. But Jean Lee handles this situation with grace and devotion. Through her parents’ letters, she shares their love story. Ed and Ibby have a beautiful bond as do their daughters, yet the girls face a challenging road of caregiving that is sad, humorous, and touching, but always a model for how to love well. In Jean’s book, she casts a spell of nostalgia, faith, and whimsy, pulling the reader into a circle of intimacy.