Still Alice by Lisa Genova
Publisher: Gallery Books
My Rating: 5/5 stars
Still Alice is a story about Alice. And her family. And her diagnosis of early onset Alzheimer’s disease.
Alice, a happily married college professor with a family, is only fifty years old when she develops the neurological disease. She begins to forget things, to lose her memory, and to experience cloudy thinking.
Alice’s story is about her struggles and triumphs in dealing with the disease and how it feels to navigate the heartbreak.
Every portrait is really a mirror for others to see themselves in. Still Alice is not a story about Alzheimer’s; it’s a story about Alice, her family, her career, her life, and also her struggles with Alzheimer’s dementia. Research on dementia often tells a story that is essentialized to a medicalization, forgetting the person, the biography, the daily life. Says the book’s author Lisa Genova, “Five million people have Alzheimer’s, and each has family and friends who know them and care about them.” Alice’s story is a portrait for others with dementia or with loved ones with dementia—to see themselves in.
Still Alice serves as evidence for promoting a person-centered approach to researching dementia and caring for those with it—a holistic approach seeing the whole person and not just their illness. The story is unique in that it is told from the inside looking out, from the point of view of Alice, the person with dementia instead of being told by a caregiver or family member. It’s her story.
Lisa Genova has a Ph.D. in neuroscience from Harvard, and after she graduated, her grandmother was diagnosed with Alzheimer’s. Still Alice is the result of a rigorous research process. She emailed daily and met with people with early-onset dementia. “They let me in and shared with me their most vulnerable selves.” She shadowed neurologists and social workers, she watched neurological testing with patients, she role-played with doctors, and she volunteered with the Dementia Advocacy and Support Network.
Her research endeavors culminated into a novel, the best way she thought to reach people with the truths about dementia she had uncovered. Publishers initially rejected Lisa Genova’s manuscript, arguing both that it would only appeal to people with dementia and given her academia background, she should stick to writing non-fiction only. But fiction may be a powerful tool in creating empathy, especially for people with illnesses.
This novel offers a portrait of a person with a real illness and is a catalyst for developing empathy for people with those illnesses. Reading Alice’s story “can show us what it is like to be another person.” Fiction creates empathy for others through identification with a character, seeing yourself in their portrait. Because Still Alice is a story about Alice, what do you see in the mirror of Alice’s portrait?