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Genova Uses Storytelling to Understand, Destigmatize Alzheimer’s Disease

Lisa Genova expressed that her knowledge as a neuroscientist was not enough to fully understand or explain the brain and certain neurological diseases—she had to become a storyteller. 

“Going beyond the medical, the science, and clinical information to stories is like going from black and white to Technicolor,” said Genova, a neuroscientist and New York Times bestselling author.

The department of psychology and neuroscience and the Schiller Institute for Integrated Science and Society co-hosted Genova on Thursday evening. Genova spoke about her journey discovering that empathy and storytelling are important vehicles for learning about and destigmatizing neurological disorders. 

Genova defined Alzheimer’s disease as a progressive, lethal neurodegenerative disease that causes dementia primarily. She emphasized its worldwide prevalence. 

“I learned that we’re talking today, about six million people in the United States have Alzheimer’s disease [and] a staggering 55 million [have it] worldwide,” Genova said. “At the age of 65 in the U.S., one in 10 people have Alzheimer’s. At 85, it is one in three, fast approaching one in two.”

Despite her expertise in the statistics, anatomy, and molecular neurobiology behind Alzheimer’s, Genova said her understanding was still limited when her grandmother was first diagnosed. 

“Without adding empathy … even armed with all of that education and a Ph.D. in neuroscience from Harvard, I still didn’t know how to be with my grandmother,” she said. “What happens when I add on top of this the story of a person living with Alzheimer’s, Huntington’s, or ALS? Then I’ll have a much richer, deeper understanding because I’m now humanizing these experiences.”

Genova said she realized the importance of storytelling by writing her novel, Still Alice, which was influenced by her relationship with her grandmother who had Alzheimer’s disease. Her main source of inspiration was real-life Alzheimer’s patients at Massachusetts General Hospital.  

“I came to know 27 people living with early-stage and early onset Alzheimer’s who… shared with me very candid, vulnerable conversation,” Genova said. “These conversations were incredibly real and intimate, and so they were the real experts that informed the story.”

Genova gained insight and valuable information through her conversations with people living with Alzheimer’s, and she said those people received the opportunity to feel valued and acknowledged.

“I think that the public’s perception of this disease is that it is the disease of the dying elderly … so you can give them the chance to have a say, to give face and voice to their experience,” Genova said. 

According to Genova, it is crucial to treat those with Alzheimer’s and other neurological disorders with empathy—not just sympathy. 

“Sympathy keeps our experiences completely separate and detached,” she said. “Empathy collapses that emotional distance between us and allows for real intimacy, connection, shared experience.”

Genova explained that empathy comes from a willingness to walk in someone else’s shoes and listen to their story, which is tied to improvisational ethics. 

“The number one rule [in improv] is to say ‘yes, and’ to anything the other actor says,” she said. “People with Alzheimer’s don’t follow a predictable script … so being around someone with Alzheimer’s is a lot like being with an actor.” 

Genova reminded the audience that despite their differences, people with Alzheimer’s and other similar neurological disorders are human beings and should be treated as such. 

“Alzheimer’s cannot destroy the parts of your brain that are responsible for human emotion and connection,” Genova said. “So even in advanced stages of Alzheimer’s, you’re still capable of feeling love, loneliness, joy, sadness, and frustration with the full range of human emotions.”

Drawing on a personal example, Genova said that when her grandmother’s memory deceived her, she acknowledged her grandmother’s imaginative thoughts rather than attempting to correct them.

“We can use empathy and ‘yes, and’ as a tool to stay emotionally connected and understand deeper our loved ones with Alzheimer’s because until we have a cure, that’s what we really want,” Genova said.

Genova concluded her talk by explaining that her “yes, and” theory to approaching conversations with Alzheimer’s patients can be applied to other aspects of life. 

“I really believe that learning through story, and more specifically through the lens of empathy, is the most powerful way to learn anything,” she said.

November 5, 2023