My List of Useful Resources for Learning About Alzheimer's
You finally hear the diagnosis about a loved one. “It’s Alzheimer’s disease,” the doctor states. You’d been noticing that your loved one – whether a family member, friend, colleague or acquaintance – was having some mental lapses and may have been doing some confusing things without realizing it (such as putting a freshly washed frying pan into the freezer instead of in its place on the overhead hanging rack). So now that there’s a “new normal,” how do you prepare yourself to handle the changes that may soon take place?
Obviously, you can – and hopefully will – study up on the various stages of Alzheimer’s disease. But there are other ways to learn more effectively and efficiently about the changes that the loved one is undergoing. Therefore, I want to offer a resouce list of one guidebook, one documentary, two movies, and one memoir that can help demystify Alzheimer’s disease. Here goes:
- The 36-Hour Day by Nancy Mace and Peter Rabins. Right after Mom was diagnosed with Alzheimer’s disease, a friend whose husband had the disease recommended that I get this guidebook. The 36-Hour Day quickly became my go-to book to understand all things about the disease, including what was happening in Mom’s brain, why she was acting the way she was, how my choices as a caregiver affected her, and how to take care of myself while caregiving. I thought it was so informative that I instantly bought one for my father (who had been flummoxed by Mom’s strange behaviors); it really helped him understand the changes that Mom was undergoing.
- HBO’s The Alzheimer’s Project. This multi-part documentary is just awesome and you can stream it for free on HBO’s website. There are four films – The Memory Loss Tapes; Grandpa, Do You Know How I Am with Maria Shriver; Momentum in Science; and Caregivers. There’s also a supplemental series of 15 films that gives some addition context about the disease, including mild cognitive impairment, early-onset Alzheimer’s, research, drug development and brain imaging.
- Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s by Barry Petersen. The CBS News correspondent pulls the curtain back on the challenges faced by his wife, Jan, who was diagnosed with early onset Alzheimer’s disease. He honestly recounts the challenges that the couple faced as the disease was emerging disease when he was stationed in Tokyo as a correspondent. You also feel the angst that Petersen experiences as he makes some caregiving decisions that anger some of Jan’s friends and family members back in the United States. And Petersen bravely shares his own thoughts of depression and consideration of suicide, along with his life choices after Jan is placed in an assisted living facility.
- Away from Her – This movie, starring Academy Award nominee Julie Christie, also looks at early onset Alzheimer’s disease. Christie shines in her role as a wife who slowly succumbs to the disease. The movie also chronicles the changes in her marriage to her husband, Grant, as she starts to forget who he is.
- The Savages – Also well-received, this movie stars Philip Seymour Hoffman and Laura Linney as siblings who finally have to take matters into their own hands as their father is stricken with dementia. You see Linney and Hoffman have to face well-developed dysfunctions in the family and figure out how to get around them.
- Still Alice by Lisa Genova. This fictional book really gives you the perspective of someone who has this disease. The main character, Alice, is a Harvard psychology professor who is diagnosed with early onset Alzheimer’s disease. What makes this book so moving is that you’re watching someone who has succeeded professionally based on her mental abilities slowly lose herself as dementia takes over her brain.
In the future, I hope to add more to this syllabus. There are many books and movies about Alzheimer’s, caregiving and the aging process that are on my “to do” list. And hopefully, you’ll make some recommendations of ones that you’ve found helpful in the comments below.