100 books like American Dementia

When I was a biomedical science graduate student, this book was on my shelf for a couple of years before I read it. I had pulled it out of a classmate’s trash bag when I was helping him move. Later, when I became distressed because my research findings were dismissed as “controversial,” a postdoctoral fellow in my lab told me that what I experienced was actually quite normal for novel scientific findings and I should read this book.

I did, and it changed forever my understanding of science and how scientists often resist accepting from others the very thing they pursue themselves: new discoveries. When I became a principal scientist, I made a gift of this book to every new scientist graduating from my laboratory.

This book offers a captivating tale of how the increasing knowledge of one disease, syphilis, created the foundations to understanding that the brain and mind are one and the same. The authors narrate the stories of patients whose “hysteria” (today referred to as functional neurological disorder) were traced to degenerative brain lesions that only belatedly were understood to be complications caused by remote infections with the bacterium Treponema pallidum. Several chapters follow the story of the important characters depicted by André Brouillet in the Une leçon clinique à la Salpêtrière (A Clinical Lesson at the Salpêtrière), one of the most recognized paintings by neurologists, as it depicts Jean-Martin Charcot, shown among many of his disciples, demonstrating a “hysteric” seizure in one of his patients. The authors illustrate how we have gotten away with conceptualizing behaviors without biological basis and put the reader on notice that “mental illnesses” are neurological problems… show more.

Stan Prusiner received the Nobel Prize of Medicine in 1997 for identifying what at the time was considered a novel mechanism of neurodegeneration: the prions. These “infectious proteins” were responsible for ravaging the brains of animals suffering from scrapie and mad cow disease, and of humans with Creutzfeldt-Jakob disease. Although I have come to doubt that prions are a cause of rapidly progressive dementia and may instead represent a consequence, Prusiner’s memoir is filled with moments of skepticism, self-doubt, adversity, and intellectual rivalries –the ingredients for a gripping drama in neurosciences. 

This collection of essays blew my mind. Researchers in a range of disciplines were asked to elaborate on why a given idea in their field should be put to rest. There is a chapter dedicated to big data, nature versus nurture, cause and effect, race, Linnaean classification, etc. The book’s essays inspired me to shape a section on “Reductionism and related ideas that will die” as part of a solicited article I wrote with Tony Lang in 2018 aiming to predict the future of Parkinson’s disease research in the 2020s (Ben Stecher credited it as his reason to relocate to Cincinnati to work with us in our CCBP study). This book is also a reminder that progress requires new ideas, and most cannot emerge without first abandoning outdated ones (as Kuhn articulated).  

An idea that must die in neurology is the clinico-pathologic model of classifying neurodegenerative diseases: abnormalities on brain… show more.

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. 

Susan Landeis dealt with rejection and jealousy from her own mom as she was a little girl and through her teenage years. What does one do when an estranged parent is diagnosed with dementia and needs care? It is a rare individual who reacts with the kindness and forgiveness of Landeis. Because of that generosity and love, or perhaps because her mother forgot the meanness and rejection she inflicted on her daughter in years past, Susan and her mom grew a beautiful relationship during those caregiving years, giving them both comfort in the end.

I was drawn in by Marianne Sciucco’s novel about a man caring for his wife with Alzheimer’s. It’s a love story between a long-married couple, one of whom has dementia. It’s about a husband’s determination to honor his wife’s request to stay in their home, even though his own health is failing. It’s about the magic of the day they “escape.” I loved this book because it showed me that love endures despite dementia; despite what life throws our way. 

Ann Campanella’s memoir details her journey through caregiving for her mother with Alzheimer’s at the same time she was struggling to start her own family. I felt it all: the anxiety, the frustration, as well as the pain, as she watched her mother decline while coping with an inability to conceive. Ann’s book reminded me to appreciate life’s joys, no matter how small, whether riding a beloved horse, marveling at a sunset, smelling a beautiful flower, or offering a simple hug. 

Sticky Notes centers on a parent who has early-onset Alzheimer’s and is told from the perspective of a 10-year-old boy, Foster. The voice is a genuine one and the writing is heartfelt, as Foster compares his own forgetting to Dad’s forgetting and sometimes convinces himself that there is no need to worry. The confusion and lack of clear discussion with Foster about what is happening is a real challenge for many dealing with the disease. As the forgetting gets worse and Dad begins to change, Touchell documents the family changes that Foster and his mother go through too, with a sensitive touch. 

Based on Kathryn Harrison’s daughter’s observation about her grandma, Weeds in Nana’s Garden is a metaphor that compares the weeds in a garden with the “weeds” that take over a person’s brain when they have dementia. Kathryn wrote and illustrated this engaging book to help her own children better understand what was happening to their beloved grandmother. I loved both the story and the brightly colored illustrations. Although written with children in mind, I believe it has a message for people of all ages.