‘Still Alice’ and the Politics of Alzheimer’s

With its recent Academy Award nomination for Julianne Moore, “Still Alice” has drawn attention to the issue of assisted suicide for Alzheimer’s patients.

It’s a small miracle that Still Alice, Lisa Genova’s novel about Alice Howland, a 50-year-old linguistics professor faced with early-onset Alzheimer’s disease, got made into a feature film starring Julianne Moore. Genova self-published her novel in 2007, and it wasn’t until two years later that Simon & Schuster picked up Still Alice and gave it mass distribution through Pocket Books.

Moore’s portrayal of Alice, which has earned her an Academy Award nomination, reminds us of how movingly Alzheimer’s disease has been captured in films. Like Judi Dench in her 2001 portrayal in Iris of novelist Iris Murdoch’s battle with Alzheimer’s and Meryl Streep in her 2011 portrayal in The Iron Lady of British Prime Minister Margaret Thatcher’s mental decline, Moore manages to inhabit her character from the inside out.

What’s different about Genova’s novel and the film made from it by the writer-director team of Wash Westmoreland and Richard Glatzer is that they take on the politics of Alzheimer’s. Book and novel are concerned not only with the treatment of those suffering from Alzheimer’s but how much leeway we grant them in the life-and-death decisions they must make about dealing with the disease.

Still Alice is in this respect a companion piece to surgeon Atul Gawande’s recent Being Mortal: Medicine and What Matters in the End. Still Alice is above all a mediation on the end of our lives. The key to Alice’s thinking comes in a speech that she delivers at the Annual Dementia Care Conference. Alice, who up to this point in her life has done her best to conceal her Alzheimer’s, makes no effort in her speech to minimize all that she cannot do.

“My yesterdays are disappearing, and my tomorrows are uncertain,” Alice confesses. But at the same time that she makes this admission, Alice insists that her condition does not erase her reasons for wanting to go on. “I live for each day. I live for the moment,” she declares.

The speech constitutes the most didactic moment in the novel and the film. In the mass-market paperback edition of the novel, the ideas in the speech are even repeated in an interview with Lisa Genova, a Harvard Ph.D. in neuroscience, who speaks in detail of her work with the Dementia Advocacy and Support Network.

Neither the novel nor the film is, however, a sermon on Alzheimer’s masquerading as a story. Alice’s brave speech about continuing her life must compete with a scene in which she comes upon a note she wrote to herself on her computer when she was still in the early stages of Alzheimer’s. The note, at once terse and self-aware, is based on the idea that when Alice has reached a point when she cannot answer certain basic questions about herself, it’s time for suicide.

“You are not living the life you want to live,” Alice writes in the note, which provides her with instructions on how to take a fatal dose of the pills she has hidden in a drawer. “You have chosen an outcome that is the most dignified, fair, and respectful to you and your family,” the note assures her.

It is a confusing moment for the now severely compromised Alice, and the scene ends with her bungling her suicide attempt. Would she be better off had she succeeded? Neither the book nor the movie provides a definitive answer, but in both we have a succeeding scene in which Alice, despite the increasing severity of her Alzheimer’s, takes enormous pleasure in cradling her newborn grandchild. She is not, the scene implies, so far gone that she can’t respond to one of life’s deepest pleasures.

In the New York movie theater in which I saw Still Alice, I heard a woman in the row behind me whisper “Thank God” after Alice failed to swallow the pills she had saved up. I was reminded by her remark of the point in Dr. Gawande’s Being Mortal in which, after railing against medical treatments that needlessly prolong life, he registers his misgivings about physician-assisted suicide.

It’s hard to quarrel with the tenderness of the woman I overheard in the theater or with the caution of Dr. Gawande, but missing on the part of both is how those with Alzheimer’s need to get the final vote, along with help from their doctors, on how and when they leave life.

I think of my mother, who in the early stages of her Alzheimer’s asked a close family friend if he would mind holding open the elevator doors in the building that she was leaving so she could jump down the elevator shaft. The friend, who might still be in prison if he had complied with my mother’s wishes, still feels guilty about saying “no” to her, but he should, I believe, rest easy.

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The deeper truth, as Still Alice makes clear, without being proscriptive, is that people like my mother and Alice deserve better legal options and more assistance than they now can get when Alzheimer’s strikes and their primary concern is with ending their lives, not palliative care.