'Still Alice': The Cruel Toll of Early-Onset Alzheimer's

By Brian Carpenter
Associate Professor of Psychology

In case you hadn’t noticed, we’re in the middle of cinema’s awards season, first the Golden Globes, followed by the BAFTAs, leading up to the Academy Awards on February 22. Among the winners so far, Julianne Moore has captured several Best Actress awards recognizing her performance in Still Alice. In this film, adapted from the 2007 novel of the same name by Lisa Genova, Moore plays Alice Howland, an accomplished linguistics professor who is diagnosed with early-onset Alzheimer’s disease (AD). Over the course of the film we watch the progression of her disease and its profound effect on her career, her family and her self. I’ve split “her self” into two words on purpose, because as anyone who has experience with this disease knows, it attacks the very core of a person. And Still Alice depicts that feature of AD most poignantly, though other features less thoroughly.

In our early introduction to Alice, we see her delivering a talk on her linguistics research. At first she is calm and confident, speaking with obvious command of her subject; the ideas spill forth, the words flow effortlessly. And then she pauses, searching for a word, and the uncomfortable silence expands. She jokes about having had too much champagne the night before, the word finally comes to her, and she moves on. But we sense something ominous.

The story proceeds, and we witness more frequent and more severe episodes of forgetfulness. Alice gets lost while running about her own campus. She forgets how to make her family’s favorite bread pudding. Her neurologist advises an evaluation and shares his suspicions with her, which she keeps from her husband until the diagnosis is more certain. When it is, there is a family meeting with her children, at which Alice tells them about her diagnosis and, significantly, tells her children about their own risk of developing early-onset AD if they carry the gene. There is shock, of course, but the film moves quickly away from the family, concentrating on Alice’s unfolding journey. And it’s a frightening one.

In one of the most riveting scenes, knowing what lies ahead for her, Alice programs quiz questions for herself into her phone. “What street do I live on?” “What is my eldest daughter’s name?” And she records a video of herself, to herself, in which she gives step-by-step instructions on how to find and take the lethal pills she has stashed in case she ever reaches the point she can’t answer those questions. Another ominous development. From that point the pace of the story picks up, and we witness Alice’s gradual, relentless decline, suspecting from her earlier actions where this might be headed.

Across many scenes the film depicts some of the most excruciating symptoms of AD — the language difficulties, incontinence, not recognizing her family. We see a self dissolving and, at least at first, a self aware of its own dissolution, and that is agonizing to watch. Moore portrays Alice’s decline with accuracy, if not nuance, and the emotional impact of her experiences will be familiar to anyone who has had some contact with a person who has AD or another kind of dementia. She conveys with great feeling the disorientation and the frustration described in other first-person accounts of living with the disease, such as Samantha Harvey’s novel The Wilderness and Thomas DeBaggio’s autobiography, Losing My Mind.

Overall, the film provides a moving portrait of one individual living with a horrible disease. As a person whose career has focused in large part on dementia research and care, I’m usually an advocate for any effort to educate a wide audience about dementia, and Still Alice accomplishes a piece of that by sensitizing viewers to what it might be like to lose one’s cognitive capabilities.

At the same time, it glosses over other issues that could have been given more attention. For instance, the early-onset type of dementia that Alice has is a relatively rare form of AD, accounting for approximately 5 percent of cases according to the Alzheimer’s Association. Yes, the film is accurate in depicting the pace of decline for that type of AD, but for most people the progression is much slower and longer, playing out over as many as 8–10 years or more.

Source: Alzheimer's AssociationIt’s not productive to compare types of AD and try to decide which is “worse,” but I do worry that people watching this movie will leave with a misunderstanding about some aspects of the disease. In addition, little time is devoted to the implications of this disease for Alice’s family. Her children make different decisions about whether to learn about their own genetic status, but that story line is barely developed. Likewise, the film alludes to tension between Alice and her husband regarding his decisions about how to care for her, but this, too, is addressed only superficially. And those stashed pills? You’ll have to see for yourself.

I’m nitpicking over details that might have rounded out the portrayal of AD more fully and its devastating impact on individuals and families. This is just one short movie, and it can’t do everything for everyone. And I’m pleased that such a major actress and major motion picture company have been willing to tackle a difficult subject and bring it to a wide audience. By current estimates, there are 5.2 million Americans with AD, and that number is expected to triple to 16 million by 2050. With no promising treatment options on the short-term horizon, many people will be touched by this disease in the decades ahead.

Still Alice isn’t a perfect movie, but it does make vivid its cruel toll, which should encourage us all to learn more about the disease, take action for our own brain health, and advocate for more research and care services. People with AD are still themselves; they still have an essential biography and self, despite what the disease takes away. That’s the award-winning message.

Brian Carpenter is associate professor of psychology in Arts & Sciences. His research focuses on the clinical psychology of aging, with an emphasis on family relationships in late life. He has published extensively in the American Journal of Alzheimer’s Disease and Other Dementias.