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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.
Corkin, a research psychologist, presents a fascinating case study of her patient, Henry Molaison, a man with no memory. Molaison—or H.M., as he was known in the scientific literature until his death in 2008—was a 27-year-old with severe epilepsy when he underwent radical brain surgery in 1953 to cure his intractable seizures.
Though Molaison’s seizures largely abated after the operation, he developed an even bigger problem, which manifested almost immediately after his surgery. Daily events vanished from his mind almost as soon as they had occurred.
Like most patients living with dementia, he could form no new long-term memories. With no new memories, he lived in a perpetual present, disconnected from his past (or at least the past after his surgery) and his future.
In 1953, 27-year-old Henry Gustave Molaison underwent an experimental psychosurgical" procedure,a targeted lobotomy,in an effort to alleviate his debilitating epilepsy. The outcome was unexpected,when Henry awoke, he could no longer form new memories, and for the rest of his life would be trapped in the moment. But Henry's tragedy would prove a gift to humanity. As renowned neuroscientist Suzanne Corkin explains in Permanent Present Tense , she and her colleagues brought to light the sharp contrast between Henry's crippling memory impairment and his preserved intellect. This new insight that the capacity for remembering is housed in a specific brain area…
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…
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…
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.
Thomas’s 2015 novel revolves around Eileen Leary, a tough Irish American nurse yearning to break the middle-class mold in which her life is set when her husband, Ed, a neuroscientist, develops early-onset Alzheimer’s.
Thomas describes his slow deterioration and the ravages inflicted on Eileen and their son, Connell, in drawn-out moments and exquisite detail. In an especially harrowing scene, Eileen stays up all night watching her once brilliant husband struggle with the simple task of tabulating the final grades in his community college class.
Though the narrative sometimes gets bogged down in minutiae, it is as unsparing an account of Alzheimer’s as I have ever read.
SHORTLISTED FOR THE JAMES TAIT BLACK PRIZE LONGLISTED FOR THE GUARDIAN FIRST BOOK AWARD NOMINATED FOR THE FOLIO PRIZE NAMED A NOTABLE BOOK OF THE YEAR BY THE NEW YORK TIMES
A stunning, heartbreaking debut - 'We Are Not Ourselves' is both the intimate story of a family and an epic of the American Century.
Eileen Leary wants more. Raised in a downtrodden area of new York by hard-drinking, Irish immigrant parents, she dreams of another life: a better job, a bigger house, more respectable friends, a happy family. When she meets Ed Leary, a brilliant young scientist, she thinks…
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…
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 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.
Gerda Saunders was diagnosed with cerebral microvascular disease, the leading cause of dementia after Alzheimer’s disease, a few days before her sixty-first birthday. This forced her to confront her mortality and to write an end-of-life plan she could live with. Gerda is a brave, inspiring woman. Her book is a rich, thoughtful accounting of life with dementia.
A "courageous and singular book" (Andrew Solomon), Memory's Last Breath is an unsparing, beautifully written memoir -- "an intimate, revealing account of living with dementia" (Shelf Awareness).
Based on the "field notes" she keeps in her journal, Memory's Last Breath is Gerda Saunders' astonishing window into a life distorted by dementia. She writes about shopping trips cut short by unintentional shoplifting, car journeys derailed when she loses her bearings, and the embarrassment of forgetting what she has just said to a room of colleagues. Coping with the complications of losing short-term memory, Saunders, a former university professor, nonetheless embarks on…
During my decades of working with caregivers as a dementia care expert, I have heard many accounts of what the experience is like—from the sad and hollow to experiences rich in significance. Everyone faces obstacles when caring for a loved one; some of these obstacles come in the form of uncomfortable or painful emotional histories or past unresolved conflicts. After each opportunity to raise awareness and understanding about how dementia impacts individuals, their families, and their communities, I have been gratified to witness enhanced feelings of hope and comfort for all involved. It is my hope that through this book I will enter your home or your professional caregiving setting and work alongside you.
This book shows you how to meet many of the daily challenges of caring for someone with dementia. Illustrated through the heartfelt stories of others this book shows your how The Best Friends method brings dignity to the lives of those presenting dementia symptoms and those who are caring for them.
I found the explanation of Alzheimer’s disease and dementia symptoms very interesting and helpful, specifically how this type of loss and experience can make the individual feel. I appreciated learning additional and successful ways to respond and communicate to many situations that caregivers face when caring for any individual with any cause of dementia symptoms.
Dementia care is complex and different for every person, and I am always looking for new perspectives and care approaches to share with family and professional care providers that can give confidence and feelings of empowerment to anyone on their individual dementia care journey-and…
More than 5 million Americans are currently living with Alzheimer's disease or a related form of dementia. By the year 2030, experts estimate that as many as 66 million people around the world will be faced with this life-altering disease. Unfortunately, these staggering statistics impact millions of caregivers, too. Compared with all types of caregivers, those who assist someone with dementia experience the highest levels of burnout, depression, poor health, and premature death. A Dignified Life, Revised and Expanded offers hope and help with a proven approach.
Ten years ago, the first edition of A Dignified Life changed the way…
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…
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…
