The best books to make sense of what’s Alzheimer’s disease, dementia, and how to live with them (as either patient or caregiver, or both)

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.” 

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. 

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.

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. 

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.