Books like Popularizing Dementia — picked by fans

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.

Michael was an executive in a Fortune 500 company when he was diagnosed with early-onset Alzheimer’s at age 49. What followed was a cascade of losses: career, income, purpose. Not one to give up easily, Michael turned his efforts and energy to dementia advocacy, speaking across the country and internationally at conferences and before Congress. His book tells the story of his newfound passion and work with raw honesty.

As a kid, I loved this funny and frightening book about the terrible things that happen to bratty children (the same could be inferred for bratty octogenarians).

I’m sure my parents hoped these tales would encourage more reasonable behavior. Instead, these tales set me on a path to writing dark stories. In this case, the contrast of humor and the horrifying is addictive, and characters in any kind of book that combine these traits are always compelling.

The illustrations in the version published by John C. Winston Company are particularly quirky, increasing the impact of each story. This book probably had more influence on my book than I realized during the writing.

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. 

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.

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.

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.