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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…
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…
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…
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.
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.
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.
I’m a physician and a writer. Together, they create a matrix of practice, research, and writing. I care for patients at the Penn Memory Center and am a professor at the University of Pennsylvania, where I teach and study topics at the intersections of bioethics, aging, and the neurosciences. I wrote The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and essays for The New York Times, The Washington Post, Forbes, The Hill, STAT, and The Philadelphia Inquirer. I raise whippets, and I’m a passionate reader of the physician and poet John Keats.
Among my prescriptions to caregivers – especially those who struggle to find meaning and in creating a typical day that is safe, social, and engaged – is Anne Basting’s book. Basting, a theater arts professor, makes a persuasive case that upends the usual and customary approaches to caring for persons living with dementia. Her central premise is this: Together, caregivers and patients can create. She offers concrete ideas and steps to address some of the most vexing challenges such as when a patient asks the whereabouts of a long-ago deceased relative.
A MacArthur Genius Grant recipient pioneers a radical change in how we interact with older loved ones, especially those experiencing dementia, as she introduces a proven method that uses the creative arts to bring light and joy to the lives of elders.
In Creative Care, Anne Basting lays the groundwork for a widespread transformation in our approach to elder care and uses compelling, touching stories to inspire and guide us all-family, friends, and health professionals-in how to connect and interact with those living with dementia.
A MacArthur Genius Grant recipient, Basting tells the story of how she pioneered a radical…
I have been teaching college students about aging since I was in my late 20s. The audacity! Now that I am officially in the “young-old” category I used to describe to my students, I more fully appreciate the social constructions of aging that affect elders, the medical conditions that can derail plans for “a good old age,” and the challenges we all face in attempting to live with meaning and purpose as we grow older. In addition to teaching, writing about, and researching various aspects of aging, especially aging with various type of dementia, my work has addressed the positive and negative ways religious faith can shape how people cope with aging.
Lynn Casteel Harper, currently minister for older adults at The Riverside Church in New York City, has written a compassionate book about contemporary fears of aging, dementia, and death. She shows how these fears produce greater social isolation and suffering for people living with dementia and caring for loved ones, whether in private homes or in care communities. She uses personal experiences to illustrate the way our fears of “vanishing” can be overcome when we learn to connect meaningfully with people with dementia.
An essential book for those coping with Alzheimer's and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (Parul Sehgal, The New York Times).
An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On…
I’m a physician and a writer. Together, they create a matrix of practice, research, and writing. I care for patients at the Penn Memory Center and am a professor at the University of Pennsylvania, where I teach and study topics at the intersections of bioethics, aging, and the neurosciences. I wrote The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and essays for The New York Times, The Washington Post, Forbes, The Hill, STAT, and The Philadelphia Inquirer. I raise whippets, and I’m a passionate reader of the physician and poet John Keats.
This first-person account of living with a biomarker-defined diagnosis of Alzheimer’s disease is a clearly written story of two very distinct, even antagonistic experiences. There’s the highly subjective experience of being a patient and the highly objective experience of being a physician who has diagnosed and cared for persons with the same disease. In one book is one narrative of two perspectives embodied in one person. The result is an unadorned account of what it’s like to lose one’s mind just a little bit at a time. Case in point is his account of apathy. I’m routinely prescribing this book to my patients.
Dr Daniel Gibbs is one of 50 million people worldwide with an Alzheimer's disease diagnosis. Unlike most patients with Alzheimer's, however, Dr Gibbs worked as a neurologist for twenty-five years, caring for patients with the very disease now affecting him. Also unusual is that Dr Gibbs had begun to suspect he had Alzheimer's several years before any official diagnosis could be made. Forewarned by genetic testing showing he carried alleles that increased the risk of developing the disease, he noticed symptoms of mild cognitive impairment long before any tests would have alerted him. In this highly personal account, Dr Gibbs…
By Andrew E. Budson and Maureen K. O'Connor
Author
Why are we passionate about this?
As a neurologist and neuropsychologist team who have spent their entire clinical, teaching, and research careers focused on individuals and their families experiencing memory loss, Alzheimer’s disease, and dementia, our goal is simple. We want to empower individuals and their families with the tools they need to manage memory loss, Alzheimer’s disease, and dementia. We work to balance pharmacological and nonpharmacological management, as well as the needs of the individual with those of their family. Reading books like the ones in our list plus articles in medical journals keeps us current with the progress in the science of dementia and the humanity of individuals and families living with the disease.
Now in its 7th edition, this book is the classic guide to caregiving for individuals with dementia. Comprehensive, and filled with stories and anecdotes, it is packed with valuable information on dementia and the behaviors that dementia engenders. We have read it several times and have recommended it to hundreds if not thousands of families.
With over 3.5 million copies sold, the bestselling guide to understanding and caring for people with dementia is now completely revised and updated!
For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer's, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care. Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the disease, it is…
For nearly 7 years I watched my father decline from Alzheimer’s. It was perhaps the most difficult journey I’ve ever taken. My book, My Father’s Brain, is a memoir of my relationship with my father as he succumbed to his disease, but it is also a scientific and historical inquiry into the fragility of the brain. In the book, I set my father’s descent into dementia alongside my own journey, as a doctor, writer, and son, toward understanding this mysterious and devastating disease.
A British neuroscientist, Jebelli travels around the world to discover the latest in dementia research.
He goes to Papua New Guinea, Japan, India, and China to learn about experimental (but mostly futile) treatments, including stem cells, blood transfusions and repurposed cancer drugs.
In the end, he acknowledges how little medicine currently has to offer patients living with dementia, even as he holds out hope (far-fetched, in my view) for a cure in 10 years.
For readers of Atul Gawande, Siddhartha Mukherjee, and Henry Marsh, a riveting, gorgeously written biography of one of history's most fascinating and confounding diseases -- Alzheimer's -- from its discovery more than 100 years ago to today's race towards a cure.
Alzheimer's is the great global epidemic of our time, affecting millions worldwide -- there are more than 5 million people diagnosed in the US alone. And as our population ages, scientists are working against the clock to find a cure.
Neuroscientist Joseph Jebelli is among them. His beloved grandfather had Alzheimer's and now he's written the book he needed…
I am a novelist, a journalist, a humanist celebrant, and coauthor with my husband of the best-selling Nicci French thrillers. Witnessing my father’s dementia and his slow-motion dying radically transformed the way I think about what it is to be human. In 2014, I founded John’s Campaign which seeks to make the care of those who are vulnerable and powerless more compassionate, and which is now a national movement in the UK. In 2016, I won the Orwell Prize for Journalism for ‘exposing Britain’s social evils' in the pieces I wrote exploring the nature of dementia.
Erwin Mortier is a poet, and this slim, intense volume is a haunting memorial to his mother in her final months. She died of early-onset dementia, and Mortier struggles to find adequate words for a condition that is profoundly connected to the failure of language and the connection of the self to the world.
'My mother, a house that is slowly collapsing, a bridge dancing to a tremor.'
It started when she could no longer remember the word for 'book'. Then her mind, her language and her identity began to slip away.
This is Erwin Mortier's moving, exquisitely observed memoir of his mother's descent into dementia, as a once-flamboyant woman who loved life and pleasure becomes a shuffling, ghostlike figure wandering through the house. Piecing together the fragments of her lost life, and his own childhood, Mortier asks: what do we become when we lose the repertoire of habits and words that make us…
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