Julianne Moore just snagged a Golden Globe and a Critics' Choice Movies award and received an Oscar nomination for her leading role in the movie Still Alice. She fully deserves Best Actress attention for her subtle, rich performance.
Also deserving of accolades is the troupe of passionate players at the heart of this story — an author, writers, producers, directors and advocates. They brought a novel about a woman with early onset Alzheimer’s to the big screen so they could show the world what the brain-wasting disease feels like for the 5.4 million Americans who have it.
Still Alice may end up being the little movie that ignites a big movement and changes how we view people with cognitive impairment and neurodegenerative diseases. It could propel Alzheimer’s onto the same stage of awareness and support as AIDS, cancer and heart disease.
Bringing the Story ‘Inside Out’
The movie’s backstory begins in 1998 as Lisa Genova, a Harvard-trained neuroscientist with a grandmother suffering from Alzheimer’s disease, discovers that almost all the literature about dementia looks at Alzheimer’s from the outside in, from the perspective of clinicians, researchers and family caregivers instead of from the viewpoint of people diagnosed with the disease.
(MORE: Inside the Mind of Alzheimer’s)
Genova was driven by this question: What does Alzheimer’s feel like?
“Somehow I felt I had to write this story and in doing so it would keep me connected to my grandma,” Genova told me during our hour-long phone interview.
It took a few years for Genova to bring her “inside out” story of Alzheimer’s to the printed page. Every publisher she approached rejected the manuscript, telling her that a novel about Alzheimer’s was too limited, frightening and depressing. Finally, Genova self-published Still Alice in 2007, and readers entered the mind, heart and daily experiences of 51-year-old Alice. While the novel is about walking in Alice’s shoes, Genova also realistically portrayed the family's experience. An Alzheimer's diagnosis affects everyone.
Flash forward to an Alzheimer’s Association advocacy event in Washington, D.C. where Hollywood insider and Alzheimer’s caregiver and advocate Elizabeth Gelfand Stearns listens to Genova read a moving passage from Still Alice. By then, the book has caught fire within the Alzheimer’s community and has hit the New York Times bestseller list.
Genova’s reading struck a chord with Gelfand Stearns, who had a maternal grandmother and a mother with Alzheimer’s. In fact, Gelfand Stearns, her father and family had created The Judy Fund to honor her mother, who was diagnosed at age 62 — considered early-onset.
From Book to Screen
Genova’s combination of telling a story of Alzheimer’s from the perspective of the person diagnosed and showcasing that Alzheimer’s is not always about being 80 and laying helpless in a nursing home convinced Gelfand Stearns to bring the book to the screen.
“I just knew so many people, especially women who are disproportionately affected by Alzheimer’s, would recognize themselves in Alice,” Gelfand Stearns told me. “This story was the opposite of the typical response to Alzheimer’s — to push it away and not think about it because ‘I’ll worry about it when I’m 80.’ This was the OMG moment when I realized everyone can see themselves in Alice — an accomplished, successful professor, wife and mother in her 50s. If Alice can have it, so could I, or my sister or my friend.”
(MORE: The Alzheimer’s Epidemic Hits Women Hardest)
Gelfand Stearns says the reality is that Alzheimer’s is the 6th leading cause of death in the U.S. and the only disease in the Top 10 that has no cure and no survivors. This is our society’s next big epidemic, and it’s important to not deny what we know is coming — a rising tide of aging people who will have dementia and little hope to slow the progression or find a cure soon.
Together with her producing and advocacy partner, Maria Shriver (the poster woman for the toll on families dealing with Alzheimer’s; her dad, Sargent Shriver, died from it), Gelfand Stearns helped shepherd the book to its big-screen debut, collecting various co-producing partners. Moore signed on to play the titular character and convinced ellow cast members to sign up for well below their typical star-status fees, including Alec Baldwin as Alice’s husband and Kristen Stewart as the eventual caregiving daughter, Lydia.
Moore, whose acting skills are matched by her exhaustive character research, insisted on spending four months talking to early-onset Alzheimer’s patients, their family caregivers, researchers, doctors and long-term care agencies. She fully immersed herself in the Alzheimer’s experience to present the story of how it feels to day-by-day lose your memory, your independence, your life.
“I need to see it for myself to authentically play it,” Moore told Gelfand Stearns. Moore became especially close to one woman, Sandy, who was diagnosed at 45, even younger than the fictional Alice. Moore related that Sandy would have days where she could remember and function almost normally, and then there would be days where things in her brain were lost.
What especially moved Moore was seeing that while Alzheimer’s erases memories and daily abilities, the personality and essence of who this person is remains. The realization that Alzheimer’s patients do not disappear is what interested Moore in doing the movie.
Rounding out this passionate group are screenwriters and directing partners, Richard Glatzer and Wash Westmoreland. Right before filming began, Glatzer was diagnosed with ALS, different from Alzheimer’s but still a progressive neurodegenerative disease. His understanding of how life slowly slips from your control brought a nuanced touch to the movie. He showed the cast and crew by example that life and your life’s passion can continue despite a debilitating disease. During production, unable to speak, Glatzer would direct the actors via an iPad.
All involved with the movie are hopeful that it will mark the moment when society and lawmakers realize we can no longer dismiss the impact of dementia.
“It’s easy for the world to ignore the elderly,” Genova tells me. “People don’t typically rally around an 80-year-old with Alzheimer’s; it’s sad and heartbreaking, but it does not create a movement. But it’s almost impossible to ignore someone in their 50s with this disease.”
Genova believes this is why the vast moviegoing public may make Still Alice a rallying cry and help erase the stigma of this disease, which has lived in the shadows for too long.
(MORE: Alzheimer’s Meets the Red Carpet)
Gelfand Stearns pointed out that many years ago we never said the word “cancer.” It was called the “Big C,” and people feared it as a death sentence. Then in the '80s and '90s, AIDS and HIV were stigmatized and seen as only affecting a certain part of the population until Hollywood got behind the movement (remember Philadelphia?) and gained Washington, D.C.’s attention.
Gelfand Stearns would like Still Alice and the campaign she's launching with Shriver and the Alzheimer’s Association, My Brain, to have the same results.
“My wish is that Julianne wins the Oscar, making everyone want to see this film which will lead to showing people the humanity, love and dignity of Alzheimer’s patients,” an emotional Genova told me. “If my book and this movie can be a cause for the call to action, what could be better than that?”