Still Alice is a novel, not a work of nonfiction. Yet it probably offers one of the most accurate and gripping accounts of the experience of early-onset Alzheimer’s disease ever written.
At first, Lisa Genova, a Harvard PhD in neuroscience, self-published her book. Her story resonated, and Still Alice took off, selling so many copies that it was bought by the prestigious publisher, Simon & Schuster. Over time, Genova would go on to win multiple awards for her work, and Still Alice would be made into a major motion picture.
The Alice Howland we meet at the outset of the book is an esteemed professor of cognitive psychology at Harvard. She’s a brilliant teacher and scholar, who is routinely invited to give lectures around the country and the world. In the opening paragraphs, it is her husband, also a highly-accomplished researcher, who has misplaced his glasses and needs help finding them.
Then, the first clear sign of trouble appears. Alice has been invited to give a colloquium at Stanford, and in the middle of a part of a lecture that she has given many times before, Alice cannot find the word she is looking for. She just couldn’t come up with it. She never did think of it until she was on the plane, heading back home. Alice goes on to generate all sorts of plausible explanations for this uncharacteristic lapse, just as she had for the more familiar experience of misplacing common objects, such as her phone charger.
Still Alice is a book that builds and builds, as Alice’s once-reliable memory fails her increasingly often until she can no longer put off seeing a doctor. Once her diagnosis is confirmed, Alice’s symptoms progress, though she tries to hide or work around them. As the people in her life become more attuned to and alarmed by what is happening to her, Alice becomes more and more scared, too. She knows where this will end. She won’t even recognize her own children.
The responses of her family members as she becomes less and less like the person they once knew are panicked, loving, confused, embattled, devoted, and disturbing. In one of the most painful scenes, they all sit around discussing her and what they should do about her, as if she were not sitting right there with them.
One of the great strengths of the book is that, although Alice is its central character and beating heart, the perspectives, concerns, and fears of the significant people in her life are fully realized, too. As readers, we may sometimes feel judgmental or heartbroken when they are insensitive to Alice, the character we come to love, but we also get it. We feel their pain and their terror, too.
The indignities of early-onset Alzheimer’s disease are not sidestepped. At one point, for example, Alice simply cannot find the bathroom in the house where she is living. She cannot hold it in any longer, and wets herself.
And yet, Still Alice manages to be a tale of great dignity. For example, Alice recognizes that it would be profoundly helpful to find others with the same disease, to meet with and share experiences. At the time Still Alice was written, such patient groups were rare; just about all the support groups were for the caregivers. Alice brings her concern to the medical staff, but they have little to offer. So she creates such a group, mostly on her own. As she anticipated, it makes a tremendous difference.
Although Still Alice is fiction, it is firmly grounded in the actual experiences of people with the disease, and it draws extensively from the contributions of experts in Alzheimer’s and aging. While Genova researched the book, she worked closely with the Dementia Advocacy and Support Network, and spoke daily with people with Alzheimer’s.
Perhaps the best indication that Still Alice authentically captures early-onset Alzheimer’s disease is that it was endorsed by the National Alzheimer’s Association. In the Readers Club Guide for Still Alice, Genova notes that as far as she knows, no other book had been endorsed by the organization.
Still Alice is likely to be heralded, loved, and passed along from one grateful reader to another for many more years to come. It speaks to those afflicted with Alzheimer’s, family members, friends, caregivers, researchers, practitioners, advocates, and even people like me, with no personal or professional connection to the disease. I like a good, empathic, compelling story that helps me understand the deeply significant psychological experiences of other humans. Still Alice delivers.
Paperback, 352 pages