Wednesday, May 12, 2010

Where did I leave my car keys?

Why do I keep reading these books about people with Alzheimer’s? Do I think that somehow reading about it can prevent it from happening? If only it were that simple. My lastest foray into the realm of the mind is the novel Still Alice by Lisa Genova. Genova has a PhD in neuroscience from Harvard and helped care for her own grandmother who had Alzheimer’s in her 80s so she knows whereof she writes on several levels.

This is the story of Alice Howland, a professor of cognitive psychology at Harvard, married to a scientist, with three grown children. It starts with small moments: she forgets a significant word during a lecture presentation, but remembers it later (of course); she goes out for a run and momentarily doesn’t recognizing the surroundings where she has been a thousand times (Harvard Square); she asks her daughter the same question about her roommates (“I just told you. Why don’t you listen to anything I say?”). But the scariest part is that Alice is only 50 years old.

When she can no longer pretend that these incidents are related to early menopause, she investigates as the scientist that she is and finally receives a diagnosis of EOAD (Early Onset Alzheimer’s Disease). By definition, EOAD is only for people under 65 years of age. All of this happens early on in the book so no spoiler.

Then the book follows Alice and her family as they come to terms with her illness and as it progresses. But unlike many other books on the same subject the voice of this story is that of Alice, from the “inside” as it were. There’s a lot to learn here including some real science and especially some lessons in how to interact with and how not to act toward someone who has Alzheimer’s. The family members who rise to the occasion – or fall – are not always the ones you would predict.

The particular form of the disease that Alice has is related to a certain gene for which one can be tested and which if present is unfailingly predictive of the later onset of the disease. Each of the three children has a choice of whether to be tested and find out if he or she will eventually develop EOAD. I am still thinking about what I would do in that circumstance. Would I get the test? How would life change if I learned that I had the defective gene? Would I want a pact among siblings that we all make the same choice? What if we had differing results?

Of course I am too old ever to have EOAD but that’s only one variation. From the World Health Organization website: “In November 2000, the National Institute on Aging (USA) estimated that up to 50% of Americans aged 85 years or more may have Alzheimer’s disease.” As we look at our friends and family and are working hard ourselves at living healthy lifestyles to live longer, we are going to face this disease “up close and personal” as they say, if we haven’t already. Studying the science of this disease will give us facts; but studying the lives of people with the disease, even through fiction, may give us some wisdom. I recommend that you read this book.


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