“Still Alice” and the Ethics of Dementia

Several friends had urged me to read “Still Alice,” a novel by Lisa Genova about a 50 year old Harvard professor and mother of three who develops early onset Alzheimer’s disease. I’ve finally read it.

My friends were right. I’d urge you to read it as they had urged me.

Alice is a distinguished professor of cognitive psychology. Her husband John is an equally successful cancer biologist. Anne, their oldest, is married to a fellow lawyer, and trying to get pregnant. Tom, the middle child, is a Harvard Medical School student, heading for a career in cardiothoracic surgery. 22 year old Lisa is studying acting in LA. It’s a stable, altogether successful family.

The problem enters in the second sentence: “[Alice] needed to finish her peer review of a paper submitted to the Journal of Cognitive Psychology before her flight, and she’d just read the same sentence three times without comprehending it.”

Alice’s initial experiences will make most readers worry about themselves. She forgets names and can’t remember what’s on her to do list. But when she forgets how to get home from a location that should be very familiar, she gets scared, sees her primary care physician, is referred to a neurologist, and the diagnosis gets made.

Alice deteriorates fast. The chapters go month by month, from September 2003 to September 2005. She manages to teach her course in the spring of 2004, but just barely. The student evaluations describe her as getting lost in the lectures and not responding to questions in a clear manner. I thought of a patient of mine who had been an outstanding school teacher before schizophrenia set in. Her annual reviews were superlative for years, then mixed, and finally described her as utterly disorganized and incoherent. And I thought of myself – how, when I momentarily lose the thread of my thought, I ask myself whether it’s “normal forgetting” or the initial manifestation of dementia.

From the perspective of medical ethics, three aspects of Alice’s story stood out for me:

1. Advance directive to herself. After the diagnosis, Alice decides that she wants her life to end before extreme deterioration sets in. As a scientist, she creates a five question test: What month is it? Where do you live? Where is your office? When is Anne’s birthday? How many children do you have? The test directs her to go to a computer file called “Butterfly” if she has trouble answering any of the questions.

“Butterfly” is a letter to herself that starts: “Dear Alice – You wrote this letter to yourself when you were of sound mind.” It describes her pre Alzheimer’s life lovingly. Then it directs her to go to the table by her bed and take all the pills in a bottle labelled “for Alice.” The letter tells her to “Go now, before you forget. And do not tell anyone what you’re doing. Please trust me. Love, Alice Howland.”

Alice does forget, and the story takes another turn. But the issue of suicide is beautifully rendered, and will be discussed in ethics classes and book clubs for years.

2. Autonomy. Alice’s husband John is offered a job he desperately wants to take (chairman of Cancer Biology at Sloan-Kettering in New York). Alice desperately wants to stay in Cambridge. Whose values should prevail? The children take Alice’s side. John, who loves her and has been a devoted caretaker, asks them to imagine that at the time they would have moved to New York that Alice no longer knows where she is or who any of them are. What then? I was torn. Alice’s wishes should be respected, but so should John’s. In the epilogue we learn that John has taken the Sloan-Kettering job and returns to Cambridge on weekends. The children, with additional help, care for Alice at home. This family had resources to allow for a “win/win” solution. But for other families it would be “either/or.”

3. Intrinsic worth. Lisa Genova writes from the perspective of Alice’s experience. As readers, we’re inside the world of someone who is progressively confused, disoriented, and emotionally labile. Without any pontificating, Genova shows us that there’s a person inside, still trying to make sense of her life, and, when possible, to savour her experience.

Alice is severely demented, but as the title tells us, she’s still Alice!!

James Sabin, M.D., 74, is an organizer of Over 65 and a clinical professor of psychiatry at Harvard Medical School.