Why I Wrote Still Alice
By Lisa Genova
I wrote Still Alice because I am a granddaughter and a neuroscientist
Looking back, my 85-year-old widowed grandmother had been showing signs of dementia for years. But she was a smart and independent woman who never complained, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.
Then we got the phone call. She’d walked to the bowling alley at 4 a.m., insisting it was middle of the day, looking for her bowling team. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.
With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. I watched her study her own face in the mirror, not comprehending the old woman’s face she saw. I watched her fuss over plastic baby dolls as if they were real babies. I watched her check the numbers outside her front door, 148, her street address, over and over in the space of minutes, trying to assure herself that she was in her own home. She forgot her name, where she lived, to remember to go to the bathroom when she needed to, who her children were, who I was.
As a granddaughter, I was heartbroken. But as a neuroscientist, I was fascinated and wanted to understand more about this disease. I read everything I could find in the scientific literature about the molecular causes of Alzheimer’s, and I read many books written by clinicians and caregivers about how to care for someone with dementia. I learned a great deal. But I couldn’t find a satisfying answer to the question that kept coming up for me as I watched my grandmother.
What does it FEEL like to have Alzheimer’s?
This curious question, unanswerable by my Nana, was the seed for Still Alice.
I wanted to write an inspirational story that, although fictional, would be a truthful depiction of life with Alzheimer’s from the very first hints of having it, from those very first “What’s the word?” and “What did I come in here for?” to the more haunting and confused “If I can’t remember who I am, am I still me?”
And I wanted to tell a different kind of Alzheimer’s story. Alice is only 50 when she is diagnosed. Most of us think of elderly people like my grandmother when we imagine Alzheimer’s, but in fact about 10 percent of people with Alzheimer’s are under the age of 65 when symptoms first surface.
I also wanted to tell this story from Alice’s point of view. In doing so, I sit the reader right up against her Alzheimer’s. It should feel uncomfortably close at times. The reader should feel her confusions and frustrations and terror right along with her. And the reader should also feel her courage, her humor, her victories, and her love. This choice does force us to lose what’s going on inside the thoughts of Alice’s husband and the other characters, but we get an insider’s perspective into the mind of someone slipping further and further into dementia. Most people without Alzheimer’s never get to sit in that seat.
I did a lot of research to create Still Alice. I knew I’d never be able to capture everyone’s experience with Alzheimer’s, but I knew I could capture the essence of it if I did my homework. On the clinical side, I interviewed neurologists, general practice physicians, research scientists, a genetic counselor, and a social worker. And on the patient side, through the Dementia Advocacy and Support Network International, I came to know about two dozen people living with young onset dementia. They were my litmus test. They are the true experts who bravely revealed to me what it feels like to have Alzheimer’s.
For readers who have or know someone with Alzheimer’s, I think Still Alice offers reassurance, comfort, dignity, and hope. For readers with no personal connection to Alzheimer’s, I think Still Alice is a moving story that works because it’s about so much more than Alzheimer’s. It’s about identity, about living a life that matters, about family and what a crisis does to relationships.
Through Alice’s story, I hope readers will gain a greater appreciation and sensitivity for what people with Alzheimer’s and their families struggle through. I hope they will come to understand the importance and value of an early diagnosis, the current medications, and support groups. And I hope they will finish the book knowing that we are all more than what we say, what we do, and what we remember.