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Best Books to Learn About Alzheimer's Disease and Dementia

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Jacqueline Rose found this witty

As much as one might be aware of, or sympathize with a person who has a disease, it never hits home as much and the interest is never as great as when a close relative or friend is affected. When my mother was diagnosed with Alzheimer’s I had been reading about the disease for years, and the statistics were always alarming—In the US 10% of people over 65 have Alzheimer’s and an estimated 44 million people worldwide have Alzheimer’s or a related disease. We often hear the term Alzheimer’s and dementia used interchangeably, but what’s the difference? And is it a mental disease? 

It appears that dementia is an umbrella term that encompasses a set of symptoms, but is not an actual disease. Alzheimer’s is a specific disease, which causes dementia; it affects the parts of the brain that deal with thought, memory and language. And it is classified in compendiums on mental disorders as a major or minor neurocognitive disorder. 

I found that the facts and figures were not particularly helpful because, after all, people are living longer, in many countries statistics are unreliable or unavailable, and the way they are presented, in particular in the US, seem extremely alarmist. What I did find very helpful, though, in trying to learn about and understand Alzheimer’s, getting inside it, so to speak, was the abundance of great books that exist on the subject. From recounting the experience personally, in one extraordinary case—Thomas DeBaggio, who was diagnosed with early onset Alzheimer’s and was able to document the progression of the disease himself in two books—to Mathew Thomas’ novel, We Are Not Ourselves, inspired by the devastating effect his father’s Alzheimer’s had on his family. As with any illness, there is the person affected, and the friends and family around them who have to “manage” the situation. Following is a list of books, four non-fiction and three fiction as well as a graphic novel, that I found invaluable to gaining awareness about how best to cope with my mother and the way Alzheimer's is affecting her. There is also a free comic about dementia that you can download here. I did not add books for caregivers, as each personal situation varies considerably. 

Photo by Neill Kumar on Unsplash

The Forgetting

David Shenk's prize-winning book is a scientific and literary description of Alzheimer's and the research that is being done to find a cure. The Forgetting, Alzheimer’s: Portrait of an Epidemic is never boring, one feels in the hands of a caring expert. The British psychoanalyst and author Adam Phillips writes in his foreword:  "This remarkable book will radically change our notions of looking after people and our assumptions about independence. Out of fear of mortality we have idealised health and youth and competence. The Forgetting reminds us among many other things that there is more to life than that." 

Our memory, writes Shenk, is our life. 

Losing My Mind: An Intimate Look at Life with Alzheimer's

Thomas DeBaggio was a journalist and an herb-grower who ran a successful nursery in Virginia, in the US, and had written several books about herbs. He was diagnosed with early onset Alzheimer's at age 57 and decided to chronicle for people what it was like to have the disease when he realized that most people associated it with a stigma and preferred to hide it. He appeared on television and on the radio and in 2002 wrote Losing My Mind followed by When It Gets Dark in 2003. At times sentimental, poignant and insightful, DeBaggio describes, often with humor, his increasing difficulties as his mind deteriorates. 

When It Gets Dark

When it Gets Dark is essentially DeBaggio's swan song. Although he lived eight years after the publication of this book, one can only imagine how painful the last years must have been for DeBaggio and his family as even in 2003 he was describing the terror, frustration, sadness and sometimes anger at his rapidly deteriorating mind. Although When it Gets Dark was written after DeBaggio's Losing my Mind, it is more structured, and in chronological order, which is not the case with first book. DeBaggio expands on Losing my Mind, but also turns back to his past, recounting the early 1960s and 70s and his beginnings as an herb grower. DeBaggio was also a fisherman, and often used the language of fishing and horticulture to describe his daily battle: "My long-term memory is left battered; trying to find moments of the past is like fishing with a dull, rusting hook without bait."

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Still Alice

When a colleague at work recommended this book--she had read it when her grandfather was diagnosed with Alzheimer's--I bought it and read it immediately, and wished I had read it several years back. This is a perfect primer, in novel form, to grasp in a simple and immediate way, the struggle that is to come. Lisa Genova is a neuroscientist who writes about neurological diseases and disorders. In this tremendously successful debut novel, Genova's narrator, Alice Howland, a Harvard professor, describes the rapid downward spiral of Alzheimer's disease that she is diagnosed with at age 50 and how her family members react around her. 

We Are Not Ourselves

Inspired by his own father's illness, Matthew Thomas took ten years to complete his autobiographical novel, which describes his personal experience of when his father was diagnosed with Alzheimer's disease. The plot involves an Irish-American couple, the woman is a nurse and her husband is a young neuroscientist. The novel follows the growing family's rise into the middle class while struggling with the father's diagnosis of early onset Alzheimer's, that cripples and shatters their family. 

The Story of Forgetting

As with many novels about Alzheimer's the inspiration for the author came from a deeply personal place. Block's grandmother had Alzheimer's and when she came to stay with his family, his mother made him aware of how he, as a child, would have to watch out for his grandmother, and also how Alzheimer's had run through generations of his family. After reading the first book recommended on this list, David Shenk's The Forgetting, Block began to write a plot, with several narrative voices, which became his account of a family on a farm in Texas. Three intertwining narratives follow the theme of "the disease that destroys the memories of those they love.....[a] fantasy world free from the sorrows of remembrance, a land without memory where nothing is ever possessed, so nothing can be lost."

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Goodbye, Vitamin

A brand new novel about ageing parents and dementia. This debut novel is about a woman at a crossroads, who moves back home to help her mother deal with her father's Alzheimer's. Khong's humor and tenderness dealing with the beginning of an end for a man who was an esteemed university professor, brings home the reality about life sneaking up on you...

The Old King in His Exile

The author Arno Geiger's father was never an easy man to know and when he developed Alzheimer's, Arno realized he was not going to ask for help. 'As my father can no longer cross the bridge into my world, I have to go over to his.' So Arno set out on a journey to get to know him at last. Born in 1926 in the Austrian Alps, into a farming family that had an orchard, kept three cows, and made schnapps in the cellar, his father was conscripted into World War II as a 'schoolboy soldier' - an experience he rarely spoke about, though it marked him. Striking up a new friendship, Arno walks with him in the village and the landscape they both grew up in and listens to his words, which are often full of unexpected poetry. Whatever happens in old age, human beings retain their past and their character. 

Can't We Talk about Something More Pleasant?

In her first memoir, New Yorker cartoonist Roz Chast brings her signature wit to the topic of aging parents. Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative as rife with laughs as it is with tears, Chast's memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents. While the particulars are Chast-ian in their idiosyncrasies--an anxious father who had relied heavily on his wife for stability as he slipped into dementia and a former assistant principal mother whose overbearing personality had sidelined Roz for decades--the themes are universal: adult children accepting a parental role; aging and unstable parents leaving a family home for an institution; dealing with uncomfortable physical intimacies; and hiring strangers to provide the most personal care. A portrait of two lives at their end and an only child coping as best she can, Can't We Talk about Something More Pleasant is both heart-wrenching and hilarious. 

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Jacqueline is a journalist primarily, but not only, interested in fiction and non-fiction with equal passion.

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