What Fiction Can Teach Clinicians About Treating Patients

By Alex Lin, PT, DPT
Physical Therapist, Texas

Fictional novels do not come to mind first when thinking of literature related to the allied health professions. Throughout our graduate-level studies, we were inundated with complicated scientific journals, dry textbooks, and endless PowerPoint slides to digest without having a second to stop and think: “What does this really look and feel like out there in the real world?” Rarely did I have the capacity to open up another book to read for pleasure, even if it was unrelated to what we were studying at the time. 

However, I distinctly remember the mandatory novel that was assigned to our cohort even before our formal didactic coursework began: Inside the O’Briens by Lisa Genova. This book helped me recontextualize the types of novels that were available. I grew up reading fantasy and science fiction, so a book about Huntington’s Disease was a hard left turn for me. At first, I was skeptical, but having an author with a Ph.D. from Harvard University in neuroscience tell this story reassured me. 

Still Alice Illustrates Empathy for Clinicians and Caregivers

When I saw a book by the same author a few years later, it caught my attention. Still Alice is a fictional account of a woman suffering from cognitive decline. It provides an empathetic account that’s particularly engaging for clinicians caring for patients in similar situations.

Alice is a world-renowned cognitive psychology professor and an expert in linguistics with an equally successful husband and three grown children. At 50 years old, she was diagnosed with early-onset Alzheimer’s disease. This story shares a point of view for healthcare providers that may not always see when evaluating and treating in the field with similar dementias. We witness early signs happening behind the scenes before her diagnosis, the denial and eventual acceptance early in her diagnosis, and Alice’s perception of the world around her as this disease progresses.

As treating providers of various progressive neurological diseases, we are lucky to see even a small glimpse of a patient’s social and familial life. It is rare to see firsthand how their relationships have changed before and after a traumatic event or diagnosis, and to what extent their inner support system will adapt and modify for better or worse. Through fiction, Lisa Genova portrays realistic situations such as a husband being deciding between a pivotal moment in his career and a new caregiving role that has been involuntarily thrust upon him. We see how Alice’s three children struggle to adapt to her diagnosis and eventually learn and modify how they interact with their mother. 

Gain Valuable Insight Into Grief and Alzheimer’s Disease Progression

The 5 Stages of Grief by Kubler-Ross are palpable in this novel — and we can see how Alice and her family navigate through those stages. Frustration and anger are some of the first signs we encounter during the characters’ early stages of grief. When Alice is preparing a dish for a holiday meal, she struggles with the recipe list and sequencing for a pudding that she made for years and years. Her outward display of outrage and self-loathing over something so seemingly simple shows just how terrible any life-changing disease can affect a person.

Throughout the novel, there is a great example of the slow deterioration of memory displayed in written form. As Alice’s disease progresses, she sets regular questions for her to answer to keep herself aware of her memory deficits: 

1. What month is it?
2. Where do you live?
3. Where is your office?
4. When is Anna’s birthday?

It’s compelling to see both the degree of detail that is lost, but also what is retained despite the ongoing atrophy in Alice’s brain. Whenever this prompt showed up, it was a fun exercise for me to guess what kind of answers Alice would provide.

Finally, I want to point out the clever way Lisa Genova allows us to experience Alice’s point of view as she reaches the later stages of her disease. We see Alice’s inability to recognize family, as she uses different descriptors such as “the man”, “the woman”, and “the actor”. It illustrates to what extent Alice discerns who is who, and how scary it would be if we ourselves had to completely trust those we do not know. 

I would recommend this book to both clinicians and non-clinicians, for differing reasons. As a clinician regularly treating these patients, we can gain from the personal and relational struggles that occur at home. As a non-clinician, friend, or family member of someone who has Alzheimer’s disease, it is helpful to learn about the disease progression and strategies to address the various changes that occur. 

P.S. The 2014 movie adaptation of the same name won Julliana Moore (Alice) an Oscar for Best Actress in a Leading Role! After finishing the book, I would recommend the movie as well.