Here are 100 books that Popularizing Dementia fans have personally recommended if you like
Popularizing Dementia.
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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.
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 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…
A moving story of love, betrayal, and the enduring power of hope in the face of darkness.
German pianist Hedda Schlagel's world collapsed when her fiancé, Fritz, vanished after being sent to an enemy alien camp in the United States during the Great War. Fifteen years later, in 1932, Hedda…
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.
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.
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.
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.
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 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…
Coyote weather is the feral, hungry season, drought-stricken, and ready to catch fire. It’s 1967, and the American culture is violently remaking itself while the country is forcibly sending its young men to fight in a deeply unpopular war.
Jerry has stubbornly made no plans for the future because he…
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 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 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…
With more than 6-million Americans living with Alzheimer’s, my story is a shared narrative. Because reading creates empathy, I work to widen the perspective of my writing and include voices different from my own. Thanks to neuroplasticity, healthy brains have the ability to keep changing and learning. Each one of these books offers a helpful nudge in a new direction. My essays and articles have appeared in numerous publications including the Washington Post, Luxe, and Variable West, and are listed as notable in the 2019 Best American Science and Nature Writing. I’m currently at work on a second memoir about motherhood and the way travel cultivates a willing acceptance of uncertainty.
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.
As with Constantine's previous titles, Dementia, My Darling can be enjoyed at random or in order. However, when taken in sequence, the poems construct a thesis on life as we remember it from moment to moment. What is your first memory of love? How soon will you forget answering that question?
An author of a caregiving memoir myself, I’m also a former magazine and newspaper editor who has had the opportunity to read and write about many topics. For the past five years, I have been a manager and director of AlzAuthors, an online global organization that offers the world’s most comprehensive collection of books and blogs on Alzheimer’s and dementia. To say I have done a lot of reading on this subject is an understatement. I’ve been honored to work with so many talented and big-hearted authors who share their Alzheimer’s and dementia experiences. Being immersed in the Alzheimer’s world through AlzAuthors has given me insight into many of the best memoirs on this subject.
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.
What would you do if both parents were diagnosed with Alzheimer’s?At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.”They protect each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.”About his driving Ed defends, “I’m an excellent driver, I’ve never had an accident.” When their daughter, Rosie, finds dings in Ed’s car, he dismisses, “Someone must have bumped into me.”After Rosie moves them to assisted living, convinced they are…
Homeless following the death of his adoptive parents in a car crash and the subsequent loss of their farm tenancy, Seb decides to enrol as a residential student at the Asklepios Foundation, a College of Natural Medicine, boasting a sanctuary modelled on an ancient Greek healing temple. Spending a night…
I am a caregiver who became an author. Both my parents had dementia. I found few books written from a personal perspective to give me guidance, so the journal I kept ultimately became the book I wished I could have read during our dementia journey. The journey didn’t end for me with the death of my parents. It led me to form a non-profit with two other dementia authors. This passion project has become a global community of authors who have written about Alzheimer’s and dementia from personal experience. Now more than 300 strong, we provide quality resources for caregivers and others concerned about dementia. Learn more at AlzAuthors.com.
I was drawn in by Marianne Sciucco’s novel about a man caring for his wife with Alzheimer’s. It’s a love story between a long-married couple, one of whom has dementia. It’s about a husband’s determination to honor his wife’s request to stay in their home, even though his own health is failing. It’s about the magic of the day they “escape.” I loved this book because it showed me that love endures despite dementia; despite what life throws our way.
What if the person who knew you best and loved you most forgot your face, and couldn't remember your name? The PromiseA care facility is everyone's solution for what to do about Sara, but her husband, Jack, can't bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease. He and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. Jack has made an impossible promise: He and Sara will stay together in…
An author of a caregiving memoir myself, I’m also a former magazine and newspaper editor who has had the opportunity to read and write about many topics. For the past five years, I have been a manager and director of AlzAuthors, an online global organization that offers the world’s most comprehensive collection of books and blogs on Alzheimer’s and dementia. To say I have done a lot of reading on this subject is an understatement. I’ve been honored to work with so many talented and big-hearted authors who share their Alzheimer’s and dementia experiences. Being immersed in the Alzheimer’s world through AlzAuthors has given me insight into many of the best memoirs on this subject.
Honest and humble, Vicki Tapia shares her story in Somebody Stole My Iron of caring for both parents at the same time as they descend into dementia. Despite her mother's strong personality and her father's somewhat distant and oblivious nature, Vicki reveals the real issues of loving parents – particularly her mother – who have challenging personalities. Vicki’s loyalty in the midst of difficulty is inspiring. She also shares dementia caregiving tips at the end of each chapter, which provide comfort and affirmation for others caring for aging parents.
Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved. After Vicki Tapia's mother was diagnosed with Alzheimer's disease, followed closely by her father with Parkinson's disease-related dementia, she struggled to find practical, helpful information to light her way. Somebody Stole My Iron began as a diary to help her cope, but emerged as a road map for others. It offers a glimpse into her family's life as they rode the waves of dementia, sometimes sailing, other times capsizing. This engaging memoir offers useful information from experts within the field of Alzheimer's research, personal…
I am a caregiver who became an author. Both my parents had dementia. I found few books written from a personal perspective to give me guidance, so the journal I kept ultimately became the book I wished I could have read during our dementia journey. The journey didn’t end for me with the death of my parents. It led me to form a non-profit with two other dementia authors. This passion project has become a global community of authors who have written about Alzheimer’s and dementia from personal experience. Now more than 300 strong, we provide quality resources for caregivers and others concerned about dementia. Learn more at AlzAuthors.com.
Based on Kathryn Harrison’s daughter’s observation about her grandma, Weeds in Nana’s Garden is a metaphor that compares the weeds in a garden with the “weeds” that take over a person’s brain when they have dementia. Kathryn wrote and illustrated this engaging book to help her own children better understand what was happening to their beloved grandmother. I loved both the story and the brightly colored illustrations. Although written with children in mind, I believe it has a message for people of all ages.
A young girl and her Nana hold a special bond that blooms in the surroundings of Nana’s magical garden.Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer’s Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers.As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, learning to take-over as the garden’s caregiver.Extending from the experience of caring for her mother,…
Marriage and Fatherhood in the Nazi SS
by
Amy Carney,
When I was writing this book, several of my friends jokingly called it the Nazi baby book, with one insisting it would make a great title. Nazi Babies – admittedly, that is a catchy title, but that’s not exactly what my book is about. SS babies would be slightly more…
I am a caregiver who became an author. Both my parents had dementia. I found few books written from a personal perspective to give me guidance, so the journal I kept ultimately became the book I wished I could have read during our dementia journey. The journey didn’t end for me with the death of my parents. It led me to form a non-profit with two other dementia authors. This passion project has become a global community of authors who have written about Alzheimer’s and dementia from personal experience. Now more than 300 strong, we provide quality resources for caregivers and others concerned about dementia. Learn more at AlzAuthors.com.
Ann Campanella’s memoir details her journey through caregiving for her mother with Alzheimer’s at the same time she was struggling to start her own family. I felt it all: the anxiety, the frustration, as well as the pain, as she watched her mother decline while coping with an inability to conceive. Ann’s book reminded me to appreciate life’s joys, no matter how small, whether riding a beloved horse, marveling at a sunset, smelling a beautiful flower, or offering a simple hug.
Ann Campanella, a freelance writer and horsewoman, returns to North Carolina after a several year absence. In her mid thirties and ready to start a family, she is used to setting goals and accomplishing them. But when Ann experiences a series of miscarriages at the same time her mother shows signs of Alzheimer’s, she plunges into an emotional journey that leads her to a deeper understanding of herself and what it means to love.
"One of the best Alzheimer's books of all time." - Book Authority