The best Alzheimer’s books
When you are confronted with a major diagnosis in your family, as I was three years ago, you can be overwhelmed with the task in front of you. This is especially the case with Alzheimer’s, a disease that progresses over a period of several years.
The good thing is that because Alzheimer’s, and other forms of dementia, impact so many people, and because the disease itself and the practice of caregiving, can be such intense experiences, there is a great deal of information on the subject available.
A lot can be found online, from Wikipedia entries to message boards offering advice provided by the Alzheimer’s Association and other organization. But in this column, I will focus on books. Let’s start with reference books. One I do not recommend is “Alzheimer’s for Dummies.” I usually like the Dummies series of books, though I’m not sure what that says about me. But this particular one was published in 2004, so it’s very much out of date.
But, what clinched it for me about that book was this little gem: “Caregiving is a demanding job, but by its very nature it’s a temporary one.” Who was editing this book? Was I supposed to see this as a light at the end of the tunnel?
There are good reference books. One for caregivers is “The 36-Hour Day: A Family Guide to Caring for People with Alzheimer’s Disease, Related Dementias, and Memory Loss,” by Nancy L. Mace and Peter V. Rabins. This one is a bit like “What to Expect When You’re Expecting” for pregnant couples. You don’t read it for pleasure, but it has information and advice on hundreds of scenarios.
One that is a bit more readable is “Surviving Alzheimer’s: Practical Tips and Soul-saving Wisdom for Caregivers” by Paula Spencer Scott. This one shows an understanding of the stresses a caregiver is under and provides specific advice for dealing with many of the difficult scenarios in which you might find yourself.
A similar one, and perhaps my favorite of the reference books, is “Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing With the Disease” by Joanne Koenig Coste. This one can help you reframe your thinking so that you can reduce the stress in the interaction of someone with diminished memory and cognitive skills.
Lastly, there is “Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers” by Jolene Brackey. I haven’t read all of this one yet, but finding these moments is crucial for relieving the stress on the caregiver and creating a more peaceful environment with the person afflicted with the disease.
But reference books aren’t everything and you may be better served by personal stories. There are many of these, perhaps because of how intense the disease and caregiving process is. People seem to have a need to be understood.
Maybe the best-known book is “Still Alice,” by Lisa Genova. This is written as a novel, not firstperson, but from the perspective of Alice, a college professor afflicted with early-onset Alzheimer’s. Julianne Moore won an Oscar for her portrayal of Alice in the film version.
Another choice is “The Theft of Memory: Losing My Father One Day at a Time” by Jonathan Kozol. Kozol is a gifted writer, best known for his books on education. He writes with surprising empathy and the stories about his father’s life would have been interesting without the disease.
But probably my favorite is “Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s” by Barry Petersen. Petersen was a journalist with CBS when his wife received her diagnosis. I’m not familiar with his work elsewhere, but he knows how to write and his experience seems most similar to my own. Some people take issue with some of his choices, but as one dealing with this disease, I’d be the last to judge.
I’m a writer myself, and you can bet that I am writing about this disease. A longer work may be available in 20 or 30 years, but for now, I have three pieces on the blog site “The Good Men Project.” One is a letter to my son, entitled “Stolen Hours, Stolen Years.” Hopefully, when he’s old enough to read it, he’ll understand a bit more about what he’s dealing with now.
My second piece is called “Notes to Self” and it gives a bit of a sense of everyday life as a caregiver. More recently, I tried writing one from my wife’s perspective, entitled “What does it feel like to Develop Alzheimer’s Disease?”
If you, or a family member are affected by this disease, I hope these help.