We Are All Still Alice

“Alzheimer’s runs in my family,” I used to explain when I told people that my research interests included memory and Alzheimer’s disease. There were, I found, only two reactions to this statement: “Mine, too,” or, “Oh, I’m sorry.” It was definitely a conversation-stopper.

But a melancholic response followed by an awkward silence is to be expected. The number of deaths[i] resulting from Alzheimer’s increased by 66 percent from 2000 to 2008[ii], greatly increasing its visibility. As medicine continues to advance and our population grows increasingly older, Alzheimer’s becomes even more salient—one in eight Americans over the age of 65 and nearly half of those over 85 have the disease. As both home-care costs and disease rates rise, more and more families are affected.

In my family, it was my mother’s grandmother who, in her early 80s, developed Alzheimer’s. The symptoms weren’t that debilitating at first. Initially, she had difficulty cooking because she couldn’t remember which ingredients she’d already added. Later, her idiosyncratic symptom became constantly accusing others of stealing her underwear. But as the years went by, the disease became less benign. She had live-in help, because like other advanced Alzheimer’s patients, she could do little herself. When my mother saw her in 1997, my great-grandmother mistook her every 5-10 minutes for her daughter. A year later, in May of 1998, she passed away.

This aspect of my family history used to terrify me. I believed that because my great-grandmother had Alzheimer’s, I was at a high risk for developing it. It wasn’t until I read Still Alice, a novel by neuroscientist and writer Lisa Genova, that I learned that this is not the case. In fact, only 5 percent of Alzheimer’s cases are hereditary, and these are typically caused by early-onset Alzheimer’s, for which there is a distinct genetic marker. An Alzheimer’s case is categorized as “early-onset” if symptoms are present before the age of 65.

Alice, the protagonist of Genova’s novel, is an esteemed Harvard professor who is diagnosed with early-onset Alzheimer’s. The novel tracks the initial presentation of her symptoms and the progression of the disease. At first, she begins having minor memory problems that happen to all of us on a daily basis. I should point out here that after reading this book, every time something slipped my mind I immediately thought, Oh no, I have Alzheimer’s! Eventually the memory problems begin affecting Alice’s work, and she visits a doctor. Still Alice

As in real life, the diagnosis is devastating. Early-onset Alzheimer’s does not necessarily progress faster than regular Alzheimer’s, but it can seem that way. In the book, Alice loses her job and eventually becomes unable to recognize her own children. Admittedly, while I was finishing the novel on the bus, I cried hard enough to disturb those unfortunate few who sat near me. Some critics of the book claim that it reads more like non-fiction, and I believe that is perhaps its most important aspect. Still Alice is so emotional because it is so real. It is a heart-wrenchingly honest reflection of Alzheimer’s patients and their families all over the world. In the United States, someone is diagnosed with Alzheimer’s every 69 seconds, and at present, there is no cure.

Although knowing that few Alzheimer’s cases are hereditary gives me some comfort, what gives me more hope is the growing body of evidence that certain behaviors can decrease your risk of developing the disease. The Dana Alliance for Brain Initiatives, funded by the Dana Foundation and the Metlife Foundation, has a program called Staying Sharp. The program, aimed at senior citizens (but important for people of all ages), encourages lifestyles that promote brain health in aging. The Dana Alliance produces Staying Sharp booklets, forums, and phone conferences that inform people how to maintain brain fitness in old age. The booklet is available to download in PDF format. To request a paper copy, please e-mail StayingSharp@dana.org. And while you’re at it, pick up a copy of Still Alice. Just try to read it in private.

–Caitlin Schneider     


[i] All statistics pertain to The United States

[ii] All statistics are taken from the American Health Assistance Foundation and the Alzheimer’s Association

 

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