Meet the Creator of “Still Alice”

Lisa Genova’s first novel, “Still Alice,” tells the story of one woman’s early onset Alzheimer’s diagnosis and her painstaking descent into dementia.  Hailed by the New York Times as “heartbreakingly real” and “a story that must be told,” the book has spent over 40 weeks on the New York Times best sellers list, and has brought Alzheimer’s disease into the national spotlight.

This month, Genova’s story hits the big screen with the January 16 release of the movie version of “Still Alice,” starring Julianne Moore, Alec Baldwin, and Kristen Stewart. A trained and practiced neuroscientist, Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology, and earned a Ph.D. in Neuroscience from Harvard University.  Here, the award-winning author, shares her personal connection to Alzheimer’s and what she hopes the movie will accomplish in the fight against the devastating disease.

[Watch the official trailer for “Still Alice” here]

What is your personal connection to Alzheimer’s? Is that what inspired you or motivated you to write “Still Alice”? How did the idea come to you?
My nana had Alzheimer’s. She was diagnosed when she was 85. She had always been incredibly smart, independent, capable of anything. I watched helplessly and heartbroken as she forgot who her family was, as she chatted with a stuffed animal named Henry, as she got lost in her own home, as she couldn’t recognize her own face in the mirror.

As the neuroscientist in my family, I read everything I could to better understand my nana’s Alzheimer’s. While I gained an understanding of the neuroscience of Alzheimer’s and the perspective of the caregiver, I couldn’t find a satisfying answer to the question I most desperately wanted to know: What does it feel like to have Alzheimer’s?

[Read: What Dementia Taught Me About my Mother]

I intuitively knew two things:

1. Understanding what it feels like to have Alzheimer’s was the key to staying connected to my nana.

2. Literature is a place where we can explore empathy, where a reader can walk in someone else’s shoes.

“What does it feel like to have Alzheimer’s?” This question was the seed for Still Alice.

[Watch: Maria Shriver and Rob Lowe Discuss Long Term Care]

We’ve heard there is an interesting story behind the book’s title, “Still Alice.” How did you land on it?
In doing the research for Still Alice, I came to know 27 people living with young onset and/or early stage Alzheimer’s. I was in touch with many of these people by email, through a live online chat, or by phone every day for the year and a half that I wrote this story (and am gratefully still in touch with many from this group today). When I was brainstorming a title for this book, I searched through the hundreds of email conversations with these friends living with Alzheimer’s and was struck by the word “still” in every single email. “I’m still here.” “I can still play the mandolin.” “I still matter.” “I still love my family.” And so there was my title.

[Read: Grieving for the Living – Losing a Loved One to Dementia]

What do you think is the biggest misconception about Alzheimer’s Disease?
I think the biggest misconception about Alzheimer’s is that this is an elderly disease of the dying. I think if most people are asked to picture what Alzheimer’s looks like, the image that comes to mind is of an elderly person lying in a nursing home bed, vacant-eyed, unable to remember any loved ones or personal history. Gone. End stage. Someone dying. Well, what does living with Alzheimer’s look like?

What do you hope your book and the movie will accomplish by telling this story?
I hope my book and now the movie give people a new image of Alzheimer’s, a vivid example of a person struggling to live with this disease with all that she is while she can.

I hope the book and movie show that memory impairment doesn’t disqualify a person from belonging, from having worth and dignity.

I hope the book and movie show people who are touched by Alzheimer’s that they are not alone in this experience.

I hope the book and film help to drag Alzheimer’s out of the closet, that they invite a worldwide conversation about a disease that has been ignored due to shame and fear, that they break down some of the stigma and isolation families living with Alzheimer’s are currently burdened with.

I hope people see that even when Alzheimer’s strips away memory and language and cognition, we can still understand and feel love.

[Read an excerpt from Timothy Shriver’s bestselling book ‘Fully Alive’]

You’re a neuroscientist by trade. How has writing this book changed the way you approach your work and approach medicine?
I am now a novelist. I write accessible stories about people living with neurological diseases and conditions who are ignored, feared, or misunderstood to create compassionate awareness. This is what I’m here to do.

What was it like seeing the film for the first time and watching your words brought to life?
Surreal, magical, powerful, amazing. I’m deeply grateful to and so proud of the many, many people who poured their talent and hard work into creating this film. They did a magnificent job!

[Read: BJ Miller’s Zen Hospice Project]

Finally, what should people know about Alzheimer’s Disease that they don’t?
You are more than what you can remember.

{Image by Greg Mentzer}

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