On the weekend, a couple of friends and I took in the Oscar-award-winning performance of Julianne Moore in Still Alice. We knew the movie was about a professional woman with early onset Alzheimer’s and how she and her family had to deal with the disease as it progressed from diagnosis to decline. Since we have all had some experience with dementia in our own families, we knew that the movie would be a bit of a test, certainly not the “feel good” fluff or escapism we might generally prefer. The movie does pack a wallop, but we passed the test and wouldn’t have missed it.
The next day, I read the novel by Lisa Genova. It is an amazing book. Extremely well-written, and totally compelling. Reading the book so soon after seeing the movie made me totally aware of the differences between the two: the scenes changed for dramatic effect, the different take on the family relationships, and some insightful detail in the book which was dropped in the movie. The book was originally self-published by the author in 2007 and re-published as a trade paperback by Pocket Books (now Gallery Books, a division of Simon and Schuster) in 2009. Among other things, it includes a “Readers Club Guide to Still Alice” by the author, and “A Conversation with Lisa Genova” which is fascinating.
Lisa Genova was inspired to write the book by her own experience with her grandmother, whose Alzheimer’s was already well along before Lisa’s family came to care for her and to fully appreciate her situation. Then, Lisa became fascinated with the fundamental questions that haunt all caregivers: “What must it be like when those parts of the brain which are responsible for your own awareness and identity are no longer accessible?” “What is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s?” Still Alice is her intensely personal and profoundly moving attempt to answer these questions.
Lisa Genova is extremely well-placed to have written the book. Inspired by Oliver Sacks, the neurologist author of The Man Who Mistook His Wife for a Hat and Awakenings, she obtained a PhD in neuroscience from Harvard. As she says, her degree “was like a golden, all-access pass to the right people to talk to;” everyone from the research professionals and the clinicians to the patients, their caregivers and their advocates. Before Still Alice was even published, she shared it with the American National Alzheimer’s Association who agreed with her that it was “a truthful and respectful depiction of life with Alzheimer’s” and “wanted to give it their stamp of approval.” With the encouragement of the NAA, and the knowledge that the book could be of use to millions, she chose, initially, to self-publish the book to make it immediately available.
Genova’s novel is an attempt “to capture the essence of” the experience of early onset Alzheimer’s. She “checked in regularly with people who have… (the disease) to make sure it all rang true. They were my litmus test.” She considers it important that people understand the earliest symptoms, and how people typically deny or deflect them. She admits that her portrayal of the diagnosis process is idealized to show how it should work, and does not dwell on the arduous testing most people experience for years. She also struggled with the decision to have Alice consider suicide. She included it because she learned, with shock, that everyone she knew, who was diagnosed with the disease at an early age, did think about it.
Her book has made Genova an ardent advocate for the Dementia Advocacy and Support Network International. Unlike people afflicted with other diseases, those suffering from early onset Alzheimer’s fall away from their normal existence and face extreme alienation and loneliness. She praises the online support groups which bring these people together in a caring community of similarly situated individuals who understand each other. In her view, “it’s high time this group had a face and a voice.” She also thinks that “a greater awareness of the early symptoms and experiences matters” so that people can get early diagnoses, proper medication, access to support groups and clinical trials, so that families can properly plan, and so that the stigma of living with the disease can be reduced. Still Alice goes a long way to that end. I cannot recommend it, the book and the movie, too highly.