Lisa Genova remembers the first signs that her grandmother had Alzheimer’s disease. It started with forgetting to turn the stove off after making tea. Then she became too absentminded to handle her own checking account.
That was in the late 1990s, before Genova, a neuroscientist and author of the 2007 New York Times bestselling novel “Still Alice,” had studied Alzheimer’s in depth and heard personal stories from a variety of patients.
At the time, Genova and her family thought her 80-year-old grandmother was simply becoming forgetful due to aging. The word Alzheimer’s didn’t enter the conversation until one specific moment.
“My grandma went to the bowling alley in the middle of the night, thinking it was the middle of the day, and that it was sort of a wakeup call,” she told a Washington audience on June 14.
Genova, who is also an author and TED Talk lecturer, was the keynote speaker at an educational event hosted by Charles E. Smith Life Communities at American University’s Katzen Arts Center called “Getting Into the Mind of Alzheimer’s.”
Despite Genova’s medical background, she had trouble accepting her grandmother’s eventual Alzheimer’s diagnosis. The brain disease, which is characterized by the loss of memory and other cognitive functions, was a taboo subject both in the medical community and in the public at large as recently as 15 years ago. But talking about Alzheimer’s, Genova said, and finding ways to relate better to people who have it is the key to better understanding that disease, which more than 5 million Americans are living with, according to the Alzheimer’s Association.
After the experience with her grandmother, Genova said she decided to communicate with others who had been diagnosed with early-onset Alzheimer’s, or who had relatives with it in order to better understand the disease. She called, emailed and held chat sessions with those who had it, and found that many wanted to discuss their own experience in order to change the public perception of Alzheimer’s.
One of Genova’s main takeaways was that patients who have Alzheimer’s hate being corrected when they say something false, because it alienates them from the person who is correcting them. Genova said she learned of one person whose grandmother, known as Nana, had Alzheimer’s and would constantly ask when her mother was coming to pick her up, forgetting that her mother was dead. In that circumstance, Genova said, that while the natural inclination would be to remind Nana of this fact, the grandchild played along, which Genova called the “yes and” rule.
“When Nana says her mom is coming to pick her up, instead of correcting her, say, ‘Yes, can I wait with you?’” Genova said. “It’s not what you’re saying, it’s the emotional connection.”
Most of the patients Genova spoke with were in their 50s, and they challenged her idea of what the profile of an Alzheimer’s patient is.
“I would have said [before], that I’m picturing someone quite elderly who doesn’t speak anymore, who doesn’t recognize anyone,” she said.
Alzheimer’s, Genova now realizes, can begin in a person’s 40s or 50s, and its symptoms may not be apparent.
Genova’s discussions with Alzheimer’s patients and families became the basis for her 2007 novel, “Still Alice,” which follows the life of a 50-year-old woman diagnosed with early-onset Alzheimer’s and how the disease affects her family and friends.
Genova said her hope in writing the book and giving talks on Alzheimer’s is that the disease loses its stigma, much in the way cancer has.
“Cancer was not discussed. But then something changed. We began talking about it. If no one’s talking about Alzheimer’s then it can get ignored. If it doesn’t seem to exist, no one’s going to cure it.”
Washington resident Carolyn Lane said Genova’s talk reminded her of how it was to have relationships with her mother and grandmother, who both had Alzheimer’s.
“It was really, really hard trying to spend two hours talking to my mother,” Lane said. “People asked me constantly during that time, ‘Does she know who you are?’ I really felt that if you treated her tenderly and held her, then she would respond.”
Former National Public Radio host Diane Rehm, who emceed the event, later asked those in the auditorium who knew someone with Alzheimer’s to raise their hand. About half of the room did.
According to the Centers for Disease Control, death rates from Alzheimer’s rose by 55 percent between 1999 and 2014. During the discussion portion of the evening, Rehm asked what was behind such a large increase.
Genova and George Vradenburg, chairman of the Chevy Chase nonprofit UsAgainstAlzheimer’s, said that it was due to increased diagnoses, which stemmed from greater awareness. Vradenburg said that because it is now well known that symptoms of Alzheimer’s can begin in one’s 40s, people are being diagnosed earlier.
“We have learned that this is not a disease of aging,” he said. “It is a disease of mid-life that manifests itself later.”
Genova noted that many of the triggers that cause heart disease, such as smoking, diabetes, stress and high cholesterol, can also be risk factors for Alzheimer’s. Vradenburg added that if someone dies of a sudden event, such as a stroke, but also had Alzheimer’s, only the stroke is recorded in the autopsy. As a result, many who died of one of the lifestyle triggers of Alzheimer’s were never diagnosed.
Genova, who is 47, said genetics can also play a role in determining how at-risk someone is for early-onset Alzheimer’s. When Rehm asked her if she will undergo a test, the neurologist said yes.
“I’m a proponent of knowing, so I would get tested,” she said.