The stories behind 'Still Alice'

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Emily Mongan
Emily Mongan

In researching story ideas for McKnight's, I come across a lot of scientific articles on the latest and greatest breakthrough in Alzheimer's disease and dementia research. These articles are common — I see at least two to three a day — and they're not usually easy to spin into something relatable for our readers.

Don't get me wrong, the latest info on tangles and clumps and whether drinking alcohol will decrease or increase your chances of getting Alzheimer's is important, even if it doesn't make the front page. But between all of the research, clinical trials and peer reviewed papers, something gets lost: heart. And I'm not alone in feeling that.

That lack of heart and human connection in the field of Alzheimer's research is what struck Lisa Genova, a neuroscientist-turned-writer who penned “Still Alice.” The novel was adapted into a film last year and scored Julianne Moore an Oscar for playing the title role.

In a talk last week at Lutheran Life Communities in Arlington Heights, IL, Genova explained how her grandmother's Alzheimer's diagnosis spurred her to look past the research that was “good for the neuroscientist in me, but not for the granddaughter.”

“Still Alice” was born from a need to understand not the just science behind the disease, but what it felt like to actually live with it. Her most important resource while writing the book was an online community of people who were living with early onset Alzheimer's — people in their 40s, 50s and 60s who defied the elderly, end-stage image most people think of when they think of dementia.

One of the most important aspects of Genova's research and writing process was asking those with dementia how it felt. Taking into account how people feel is crucial to dementia care, Genova said, because while they may not remember exactly what you or someone else said to them, they will remember how it made them feel.

During a Q&A session, many audience members who worked in the assisted living and nursing home industry posed questions to Genova about how her research and experiences could help them become better caregivers.

First and foremost, it's important to become familiar with the disease. By giving people affected by Alzheimer's a face and a voice, it can help destigmatize conversations surrounding it that otherwise would be kept quiet for being “too scary or too depressing,” Genova said.

Genova also related the art of improvisational acting to caring for those with Alzheimer's. Instead of ignoring or shutting down a memory-related question or concern, Genova encouraged caregivers to engage in a bit of improv to be truthful, but give an answer that validates the person. For example, instead of answering a question about a long-dead spouse with an answer like, “He died ten years ago,” Genova says a caregiver could steer the conversation to recalling fond memories of that person, by saying something along the lines of, “I think about him a lot too. Remember that time that we all went fishing?”

By opening up a conversation about Alzheimer's, Genova said she hopes more people will view it as something that's OK to talk about. Those conversations could show people they aren't alone in living with Alzheimer's and dementia, and that comfort can be just as valuable as the latest scientific breakthrough.

Emily Mongan is McKnight's Staff Writer. Follow her @emmongan.

Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Marty Stempniak.