Lisa Genova had a dream. She wanted to someday write
a book, but as a Harvard-trained neuroscientist, her family and colleagues laughed at the thought. Ironically, life circumstances led her to that dream sooner than expected, while her grandmother’s diagnosis of Alzheimer’s led her to the valuable research that made Still Alice a New York Times bestseller and major motion film.
Still Alice is unique in that it speaks of the disease from the patient’s point of view, giving readers a glimpse of what life with Alzheimer’s might be like. It is the only book of its kind endorsed by the National Alzheimer’s Association.
On her way to the Oscars, Dr. Genova stopped in the Desert to share her story as part of the Eisenhower Wellness Matters Speaker Series. While it was inspiring to hear her journey, the most important messages came from her years entrenched in relationships with those diagnosed with the disease in an attempt to understand what they were going through. She is still good friends with many today.
Genova came to understand the frustration of caretakers in conversations and interactions with their affected loved ones. “You have to get comfortable with being uncomfortable,” she says. Much of her advice stemmed from acting classes she also took on her renegade transformation from elite scientist to the creative arts.
“In improv acting you learn to always say ‘yes, and’ to keep the conversation going,” she said. She found this also to be true with Alzheimer’s. Often those with the condition will speak of incorrect places, times or things which can be frustrating to family and friends, whose natural instinct is to correct them. “It’s not about the words necessarily; it’s about the emotional connection.”
By simply agreeing with them (“yes”) and adding to the conversation (“and”), you can keep the conversation going which is the important part, says Genova. “While they may not remember the conversation the next day, they will remember the feelings they got from the conversation.” So keeping things positive and coming from a place of love – while challenging at times – can be very beneficial.
Lisa’s journey is an incredible one, and now she has a new dream: to make the ‘often scary’ conversation of Alzheimer’s as prevalent as the conversations of the once scary ‘C word’ (cancer) and AIDS. Both of these diseases hid behind doors for years, then surfaced and moved to the forefront through conversation and awareness, which then led to research funding, preventative testing and care, and lives saved.
An important question asked by the audience was to clarify the difference between dementia and Alzheimer’s. Genova explained that often people feel safer with the word dementia as a precursor to the disease, but that is not the case. “Dementia is merely a symptom of this disease which means impairment of intellectual capacity; however, it is a symptom of many other diseases as well.” Thus, the diagnosis of dementia does not necessarily mean you have Alzheimer’s.
Of course the audience of mostly baby boomers couldn’t help but ask, ‘how do I know if I have Alzheimer’s?’ Genova presented an easy-to-grasp difference. “Most of us lose our keys, not due to memory loss, but due to lack of attention. You were doing five things at once and weren’t even consciously placing your keys down, so you have no memory of their whereabouts. However, if you find your keys in the microwave, or look at your keys and wonder what they are for, then you may have a problem.”
Genova also emphasized the importance of caretakers taking care of themselves. “You have to feed the feeder.” There are many local support groups available including the Coachella Valley Alzheimer’s Association (760) 328.6767, and the Dementia Friendly Café, a “safe space” for people to come together and socialize whether they are diagnosed with a dementia-related illness, family, friends, caregivers, and doctors. The group meets every third Wednesday of the month at PF Chang’s at The River from 3pm-5pm. For more information contact Dementia-Friendly Coachella Valley (760) 341.1095.