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.
The Problem of Alzheimer's: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It is an unambiguous account of a century of missed opportunities and our health care systems’ failures to take action. I trace Alzheimer’s from its early 20th century beginnings in the Kaiser’s Germany to its early 21st-century recognition as a crisis. I also tell the story of the biomedical breakthroughs that may allow the disease to finally be slowed with medications. These same advances are telling us a clear message: We’re not going to drug our way out of this complicated problem.
With that, the second half of the book examines how we can live with Alzheimer’s and other diseases that cause dementia. I’m especially keen to the ways patients can reclaim their autonomy and their sense of self, how families can support their loved ones, and the innovative reforms we can make as a society to improve the lives of both patients and caregivers.
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…
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…
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…
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 knowing a diagnosis, of understanding what’s happening in the brain, and how these events recast the minds of patient and caregiver.
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…
As a physician who cares for and studies persons living with diseases that cause a person to “lose their mind,” I find this book to be revelatory. Paul offers a thorough and meticulously documented account of what our mind is and how it exists outside of the borders of our hard heads. The wealth of material that Paul consistently presents with clarity is not about dementia or Alzheimer’s disease, but it will provoke you to think about how to live with or care for the extended mind of a person living with dementia.
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…
Gabrielle found her grandfather’s diaries after her mother’s death, only to discover that he had been a Nazi. Born in Berlin in 1942, she and her mother fled the city in 1945, but Api, the one surviving male member of her family, stayed behind to work as a doctor in a city 90% destroyed.
Gabrielle retraces Api’s steps in the Berlin of the 21st century, torn between her love for the man who gave her the happiest years of her childhood and trying to come to terms with his Nazi membership, German guilt, and political responsibility.
Api's Berlin Diaries: My Quest to Understand My Grandfather's Nazi Past
"This is not a book I will forget any time soon."
Story Circle Book Reviews
Moving and provocative, Api's Berlin Diaries offers a personal perspective on the fall of Berlin 1945 and the far-reaching aftershocks of the Third Reich.
After her mother's death, Robinson was thrilled to find her beloved grandfather's war diaries-only to discover that he had been a Nazi.
The award-winning memoir shows Api, a doctor in Berlin, desperately trying to help the wounded in cellars without water or light. He himself was reduced to anxiety and despair, the daily diary his main refuge. As Robinson retraces Api's…
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