Here are 100 books that Dementia and Human Rights fans have personally recommended if you like
Dementia and Human Rights.
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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.
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…
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 am a registered nurse, author, and dementia daughter. As a nurse and hospital case manager, I spent many years caring for people living with dementia and their families. This inspired me to write a novel, Blue Hydrangeas, an Alzheimer’s love story. I soon encountered difficulties marketing my book. I reached out to two other dementia daughters I’d met online who had also written books on the subject from personal experience and together we founded the non-profit organization AlzAuthors.com. Our mission is to carefully vet resources – stories of personal caregiving – to help busy caregivers find the information and inspiration they need for their own journeys. To date, we are 300+ authors strong.
A love of cycling brought Peter Berry and Deb Bunt together as friends. Deb had not encountered a person with dementia until she met Peter. His positive attitude about living well with dementia and his poetic and insightful musings on his condition inspired her to write his memoir, to preserve his story. This is a deeply moving book, full of beautiful, lyrical language.
This is an account of a year in the life of Peter Berry, an ordinary man living in a sleepy Suffolk village. Happily married and running a successful business, Peter's life changes when, at the age of fifty, he is given a terminal diagnosis of early-onset dementia. Since that day, he has learned to live with his very own 'dementia monster'. From depression and suicide attempts through to his determination to confront his dementia, Peter has embarked on a series of challenges to show that 'life isn't over with dementia, it's just a little different'. Peter has now raised thousands…
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.
Swinton, chair in divinity and religious studies at the University of Aberdeen, focuses on the ways the standard model of dementia, which views the disease almost exclusively as a consequence of brain damage, is incomplete.
Patients with dementia, Swinton notes, can have varying degrees of brain damage. Some whose autopsies revealed significant damage manifested little clinical impairment while alive. Others with only minor neuropathology had full-blown symptoms.
Therefore, Swinton argues, it is clear that social environments, through implicit messaging or explicit neglect, worsen the demented condition. What is called for is an approach based on respect and dignity.
Dementia is one of the most feared diseases in Western society today. Some have even gone so far as to suggest euthanasia as a solution to the perceived indignity of memory loss and the disorientation that accompanies it.
In this book John Swinton develops a practical theology of dementia for caregivers, people with dementia, ministers, hospital chaplains, and medical practitioners as he explores two primary questions:
Who am I when I've forgotten who I am?
What does it mean to love God and be loved by God when I have forgotten who God is? Offering compassionate and carefully considered theological…
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…
I am a registered nurse, author, and dementia daughter. As a nurse and hospital case manager, I spent many years caring for people living with dementia and their families. This inspired me to write a novel, Blue Hydrangeas, an Alzheimer’s love story. I soon encountered difficulties marketing my book. I reached out to two other dementia daughters I’d met online who had also written books on the subject from personal experience and together we founded the non-profit organization AlzAuthors.com. Our mission is to carefully vet resources – stories of personal caregiving – to help busy caregivers find the information and inspiration they need for their own journeys. To date, we are 300+ authors strong.
Jennifer Bute is a medical doctor living in the United Kingdom. After being diagnosed with dementia she had to retire from her practice and moved into an assisted living facility. Here, she continues caring for others by offering seminars on living with dementia and writing about her journey on her blog and on Facebook, as well as in this beautiful book. Her story is brave and inspiring and dispels many myths about living with dementia.
Jennifer Bute, author of Dementia from the Inside, was a highly qualified senior doctor in a large clinical practice, whose patients included those with dementia. Then she began to notice symptoms in herself. She was finally given a diagnosis of Young Onset Dementia in 2009.
After resigning as a GP, Jennifer resolved to explore what could be done to slow the progress of dementia. She and Louise Morse decided to co-write this book, Dementia from the Inside as a practical resource for those who are living with dementia.
The book tells readers what it's like to live with dementia, how…
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…
