100 Books Like Scar Tissue

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.

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.

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.

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.

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. 

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.

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. 

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.

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… show more.

Reading Patti Davis’s book is like sitting in her living room talking with her, one caregiver to another. Because she not only lived through Alzheimer’s disease and dementia with her father, Ronald Reagan, but ran a support group for a number of years, her knowledge is vast and she shares it with you. For example, chapters with titles such as, “Grief Arrives Early,” “Creative Lying,” “The Battle Over Bathing,” and “Where is the Person I Knew?” discuss important topics in relatable ways. Her story and the way she tells it also make this book a wonderful read.