Best Books to Learn About Alzheimer's Disease and Dementia
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.