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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.
Leaving Tinkertown is a romp of a memoir that takes the reader behind the scenes of Tinkertown, her father’s colorful roadside attraction in New Mexico. As Ross Ward descends into Alzheimer's, we learn what it was like growing up with this man and how Tanya’s complicated but tender history with him both repels and pulls her back home. Tanya’s writing is gorgeous, and this memoir is both vivid and heartbreaking! It’s a story you won’t soon forget.
When Tanya Ward Goodman came home to New Mexico to visit her dad at the end of 1996, he was fifty-five years old and just beginning to show symptoms of the Alzheimer's disease that would kill him six years later. Early onset dementia is a shock and a challenge to every family, but the Wards were not an ordinary family. Ross Ward was an eccentric artist and collector whose unique museum, Tinkertown, brought visitors from all over the world to the Sandia Mountains outside Albuquerque. In this book Tanya tells Ross's story and her own, sharing the tragedy and the…
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…
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…
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.
Andrea Couture’s father, a well-known, recently retired surgeon, develops Alzheimer’s at the age of 67. As someone who also lost a parent at a young age, Embracing What Remainstouched a deep place in my heart. I connected with how she processed her emotions through her writing. I also appreciated the way she balances her grief over his disease with the gratitude and joy she discovers in each moment. This is a beautifully written memoir!
***Finalist in Next Generation Indie Book Awards***
Andrea struggles to mourn a man who is still alive as she witnesses her father decline into the depths of Alzheimer’s. Denial and devastation color her life when she learns her father, Richard, a recently retired surgeon, is diagnosed with Alzheimer’s at the age of 67. Her dream to grow closer with him is crushed as the reality of his disease is fully realized. Andrea, a mother of three young children, learns to balance motherhood with daughterhood as she grapples to accept her father’s fate. Andrea rides an unpredictable wave…
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…
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’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’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 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…
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…
