Here are 100 books that Creative Care fans have personally recommended if you like
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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.
First, this book provides a wonderful history of the important discoveries of the different aspects of the disease. You also learn the stories behind many aspects of the disease that are now taken for granted—even with our 25+ years of treating people with this disease and conducting research to understand it better, we learned a lot. Dr. Karlawish also explains why research into dementia languished for more than 50 years. Finally, he raises many thought-provoking ethical issues that people with dementia, doctors, and society will need to wrestle with if we are going to solve “The Problem of Alzheimer’s.”
A definitive and compelling book on one of today's most prevalent illnesses.
In 2020, an estimated 5.8 million Americans had Alzheimer’s, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients will rise to an estimated 13.8 million by 2050.
Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its…
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 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.
Janet Ramsey’s experiences as a chaplain, therapist, and family caregiver have taught her that people living with dementia deeply desire interactions with others that uphold their dignity and offer them love and forgiveness. She interviewed many dementia caregivers and throughout the book, she lets them express what dignity and grace mean in their everyday interactions with loved ones. Each chapter concludes with a reflection on a different Psalm, reflections that speak directly to the challenges and opportunities for growth that come with caregiving. Readers need not be Christian or in any way religious to appreciate the warmth and humanity conveyed throughout this book.
"I'm a stranger in a strange land," sighed the dignified gentleman Janet L. Ramsey met walking down the care-center hallway. Those words, her first glimpse of the confusion that comes with dementia, led her into a lifetime of work with older adults.
If you have been diagnosed with dementia or you are accompanying someone with this illness, you may find yourself on a journey that began with a sudden diagnosis and an acute sense of panic. Or perhaps your journey started gradually, as you noticed changes in yourself or in your partner or parent.…
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.
Rabbi Dayle Friedman’s wisdom about aging can be appreciated by people of all religions and no religion. Her honest engagement with some of the most difficult issues aging persons face leaves readers with hope rather than despair. Her many years as a chaplain for people living in long-term care with dementia undergird her suggestions on how to make sense of what she calls “dementia’s brokenness”. She concludes each chapter with a spiritual practice readers can employ to engage more deeply with the chapter’s topics, and also at the end of each chapter, she offers readers a blessing for their own efforts to flourish as they age.
Growing Older Can Be a Time of Growing in Depth and Wisdom
"My sense is that the whole journey beyond midlife is a mysterious blend of light and dark, wholeness and fragility…. We have a chance beyond midlife to become the person we were truly meant to be. We can draw on everything we have experienced so far to contribute to the people around us and the wider world, and to find strength and resilience amid the challenges." ―from the Introduction
Whether you are fifty-five or seventy-five, approaching retirement or age one hundred, growing older brings remarkable opportunities but often…
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.
Novelist and journalist Lionel Shriver’s novel is the story of Kay and Cyril, a comfortably settled, middle-aged, middle-class British couple who make plans for their future. The experiences of a decade of caring for Kay’s father with dementia were so unsettling and disturbing that the couple agree to end their lives at 80. They carry on with their lives convinced that 80 is enough. Or maybe not. Or perhaps it depends. This book is required reading for all those planners, those self-controllers, who seize the future and bind their families with the tight contractual grip of a well-composed, gravely worded “dementia advance directive,” such as “In the event I cannot recognize family, I ask that I be euthanized” or “Should I reach a stage when I am unable to feed myself, I ask that all feeding cease.”
When her father dies, Kay Wilkinson can’t cry. Over ten years, Alzheimer’s had steadily eroded this erudite man into a paranoid lunatic. Surely one’s own father passing should never come as such a relief.
Both medical professionals, Kay and her husband Cyril have seen too many elderly patients in similar states of decay. Although healthy and vital in their early fifties, the couple fears what may lie ahead. Determined to die with dignity, Cyril makes a modest proposal. To spare themselves and their loved ones such a humiliating and protracted decline, they should agree to commit suicide together once they’ve…
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’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 book is a kind of detective story. It returns to the scene of a long-ago committed crime, namely the incomplete diagnosis and substandard care Jerry Weinstein received in an indifferent health care system and a culture haunted by stigmas. The authors are a masterful team. Bruce Miller is a neurologist at the University of California, San Francisco’s Memory and Aging Center. He’s a widely-recognized expert in the diagnosis and classification of neurodegenerative diseases. Cindy Weinstein is a professor of English literature who focuses on the 19th century American novel. Weinstein’s expertise is Herman Melville, the master of narratives of dissection.
Jerry, Cindy’s father, died in 1997 after a years-long struggle with an inadequately diagnosed and neglected dementia. Together, physicians and literary scholars reconstruct what happened. By putting words to the problem, they make sense of what was painful nonsense. This is the book to understand the value of…
The moving story of an English professor studying neurology in order to understand and come to terms with her father's death from Alzheimer's.
In 1985, when Cindy Weinstein was a graduate student at UC Berkeley, her beloved father, Jerry, was diagnosed with early-onset Alzheimer's disease. He was fifty-eight years old. Twelve years later, at age seventy, he died having lost all of his memories-along with his ability to read, write, and speak.
Finding the Right Words follows Weinstein's decades-long journey to come to terms with her father's dementia as both a daughter and an English professor. Although her lifelong love…
I’ve always looked to books for support, even as a child when in need of comfort from my parents’ constant fighting. As I became older, I looked for ways to build stress resilience and optimism, so it was only natural that I would turn to books again. I would spend hours in libraries and bookstores reading the self-help books. I eventually went on to get a master’s degree in counseling and a doctoral degree in clinical psychology, each providing plenty of opportunity to expand my collection. I now write my own self-help books and cherish the idea of giving someone else the support I once so desperately needed.
I thought I had a fairly strong understanding of how the mind works until I read this book!
I was blown away to learn how our thoughts, feelings, and actions are impacted by our environments, movements, and others.
Not only was it informative, I learned how to change things up immediately so that I’m more in tune with my body and know what I need to do to think more clearly and focused.
A New York Times Editors' Choice A Washington Post Best Nonfiction Book of 2021 A New York Times Notable Book
A bold new book reveals how we can tap the intelligence that exists beyond our brains—in our bodies, our surroundings, and our relationships
Use your head.
That’s what we tell ourselves when facing a tricky problem or a difficult project. But a growing body of research indicates that we’ve got it exactly backwards. What we need to do, says acclaimed science writer Annie Murphy Paul, is think outside the brain. A host of “extra-neural” resources—the feelings and movements of our…
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…
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.
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