“Still Alice” Puts Readers into a Reality We May Not Ever Experience

Author and neuroscientist Lisa Genova creates a bravely honest, but digestible story in Alice Howland and her early-onset Alzheimer’s disease diagnosis.

Maggie Little
Nov 29, 2021 · 7 min read
Photo by Rachel Hitchcock.

“This is my niece,” my grandfather said as he pointed to me, introducing me to his physical therapist this past summer. The incorrect relation threw me off, but I managed to give a tight smile, a polite wave, and send him into his appointment.

My grandpa was diagnosed with dementia in 2020 after a slew of symptoms prompted my family to encourage a visit to a neurologist. This quick slip of his words was the first time he had, in some way, forgotten exactly who I am to him. It was startling, but a brutal reminder of the growing seriousness of his mental state. Since his diagnosis, I have been on a journey in understanding his brain, adjusting to the new family dynamics, and preparing myself for the worst. I often turn to reading to cope, and the 2007 fictional novel, Still Alice, stood out in my Google searches of “books about dementia.”

Although published several years ago, Lisa Genova’s breakout novel remains timeless and is bound to be relatable to readers across the globe, whether that is through their own Alzheimer’s diagnosis or that of a family member or friend. The plot follows Alice Howland, a fifty-year old cognitive psychology professor at Harvard and a world-renowned expert in linguistics and her rapid decline after a diagnosis of early-onset Alzheimer’s Disease. Readers are immersed in her life as an independent, work-driven wife and mother of three grown children.

I devoured this book in less than two days; without my need for sleep, I could have blazed through in 24 hours. Genova’s story was so engaging, not only because of my recent relevancy to the topic, but because the writing voice and style placed us into the mind of Alice in a way that was honest to her struggles, but digestible. It was a brutally sad glimpse into the daily life of a dementia patient and a gripping story, expertly paced over the course of two years. Genova balanced us between the negative effects of the disease while also showcasing the beautiful challenges: those living with Alzheimer’s are fully capable of being active members of society who still deserve dignity, respect, and a voice in the room.

Although I tend to not enjoy third-person point of view (POV) as much as first person, the structure of this novel needed that outside voice to show us true reality; a story told in Alice’s POV would create an unreliable narrator as her mental state declined. By following Alice with an unbiased voice, readers were able to anchor themselves in reality, not the Alzheimer’s fog she may have been living in, and to understand the growing reach of her disease. Within the openness of third-person POV, we were able to see her symptoms gradually worsen; for example, when Alice showed up to her lecture class at Harvard, but forgot she was teaching or forgetting colleagues’ names. No matter how loudly you shout at the book, hoping she notices her decline, that’s the sinister element of Alzheimer’s: it seems like you slowly lose your ability to be aware of your disease.

I was gripped by the confrontation of The End of Life Still Alice poses, especially in the wake of my grandfather’s diagnosis. At the beginning, Alice — rightfully so — struggles with her slow loss of independence and her husband and peers at her job immediately treating her as incapable. Throughout this story, I could not help but think, this could be me (minus Alice’s Ivy League education and tenure professorship at Harvard, of course). Alice has an active mind; she’s an avid runner, willfully independent — often to a fault — well spoken, career driven, and sometimes places her self worth into her accomplishments and research success. Her job is literally to understand the human brain; she is the last woman you’d think would be impacted by a debilitating disease of the mind. Ironically, her ability to thrive among some of the brightest minds of the country ultimately did not protect her; via this lesson, Genova organically pushed me towards the tough questions: What holds your worth? What is more important: actual experiences or your memories that remain when the experience is over? How would you act if you received the news that your brain would be taken away from you, and eventually, you would not even be aware of that usurpation?

I think my favorite books contain elements like characters, tropes, themes, or messages that impact readers to think deeper, to get in there and question the meat of life. Still Alice did just that, in an engaging and simple way, all while tackling a serious topic. The unique perspective encouraged me to talk with my grandpa in a more empathic and curious manner. Soon after reading this book, I was with him, one on one, for a weekend at his home in South Carolina. With Alice’s story in the back of my head, I asked questions to understand what he feels, to learn what he is struggling with or even what he feels like is functioning well in his life. As an 80 year old, he enjoyed sharing his experience, but also held reservations in admitting the fractures of his brain. Ultimately, a good book bleeds into you, rears its head in daily life, and encourages a new perspective, just like Genova’s novel did for me. Although cases of early-onset Alzheimer’s are more rare, Alice’s family still mirrored mine — and I’m sure many others — with their mercurial emotions surrounding this new phase of life, and, most importantly, their ultimate effort to support and love through it all.

Overall, the true reality of Alzheimer’s patients is impossible for the average person to fully understand; it is an extremely internal experience that could only really be conveyed through a work of fiction, combined with accurate research and testimonies from those living with dementia. Genova pays respect to the truth of this disease and its savage ability to taketaketake, but also that a diagnosis does not mean the end of a fulfilling life. When I searched for books to learn more about dementia and Alzheimer’s, I found that Still Alice was powerfully unique in that it is a work of fiction, yet written by a neuroscientist, supported by legit medical terminology, medical trials, and the personal stories Genova collected from early-onset patients. Her attention to detail and desire to accurately depict the daily life of those in this beautifully diverse community accumulated satisfyingly into Alice’s story.

If I must give any critiques, the story was quite dialogue-heavy and plot-driven, and often, I look for books that push me to read between the lines. Nevertheless, the purpose of her book was met: authentically portray what it actually means to have Alzheimer’s, at a human level, not jumbled in a research paper or assumed through family members. Still Alice created room for understanding in me and gave a very personal, difficult disease a possibility for positive moments. While reading, I found beautiful parallels between the book and the play and recent Oscar-nominated film, The Father. Both mastered the powerful style of experiencing daily life through the point of view of the person living with Alzheimer’s. Simply put, Anthony Hopkins performance in the movie will change the way you look at dementia.

I think I would be looking at this novel through a narrow mind, however, if I did not acknowledge that this particular portrayal of Alzheimer’s and Genova’s selection of characters highlighted a privileged family with access to the best doctors, medical trials, tests, and resources. Alice’s husband, Dr. John Howland, was actually able to take a sabbatical from his own role at Harvard to care for her full time. Because of their wealth and position in society, Alice’s progression through the disease was as comfortable as possible; this privilege is not available to large sums of patients, who require extensive at-home care and expensive treatments, lack the loving support system needed, or simply are not provided the knowledge to understand the disease.

Maybe Still Alice impacted me so positively because my family is living in this space, navigating my grandfather’s diagnosis. Maybe I wanted to cry it out over the brutal sadness of Alice’s disease. Maybe it is a simple dissection of the complex questions that simulated me in a new way. But overall, I think this novel is balanced, well paced, and provides an intimate look into the life of the 44 million people worldwide living with Alzheimer’s disease or a related form of dementia. For a caregiver — one among the 15.9 million family and friends providing assistance to those with Alzheimer’s disease and other forms of dementia in the U.S. — Genova’s ability to create a digestible story grew my understanding and empathy for the human experience. Specifically for Gen Z and young folks like myself encountering this disease through a diagnosis in their circle, these words may answer questions, uproot new ones, or create fears, but ultimately, it may comfort us through Alice’s brilliance until the end.

If you have the emotional space for a novel such as this, I invite you to meet Alice and let her story carry you to a new perspective. I found myself rooting for Alice, becoming a surrogate caregiver for a fictional character, invested in her well being; even though she is encountering a disease that will shorten her life, we see that she is still vibrantly alive. She is still Alice.