Beloved actor Gene Wilder died on Sunday at the age of 83 from complications related to Alzheimer’s disease, according to a statement from his family. He was diagnosed with the progressive brain disorder three years ago, nephew Jordan Walker-Pearlman said, but it was kept a secret from the public so that fans wouldn’t be saddened by the condition.
The statement reads, in part:
We understand for all the emotional and physical challenges this situation presented we have been among the lucky ones — this illness-pirate, unlike in so many cases, never stole his ability to recognize those that were closest to him, nor took command of his central-gentle-life affirming core personality. The decision to wait until this time to disclose his condition wasn’t vanity, but more so that the countless young children that would smile or call out to him “there’s Willy Wonka,” would not have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion. He simply couldn’t bear the idea of one less smile in the world.
Experts praised the family’s decision to name Alzheimer’s disease as the cause of death, saying that it could lift a veil of stigma about the most common cause of dementia. It is also the sixth-leading cause of death in the U.S.
“There’s such a tendency to not name [Alzheimer’s disease] for what it is, and it’s commendable that they’ve identified it as a cause of death,” said Alzheimer’s disease expert Kristoffer Rhoads, a clinical neuropsychologist at the University of Washington School of Medicine’s Memory and Brain Wellness Center at Harborview.
However, he said that the condition is in dire need of a spokesperson who can continue to raise awareness about the importance of early diagnosis and treatments to prolong good mental function for as long as possible.
“Think about Parkinson’s and Michael J. Fox,” he continued. “Right now, there is not as visible of a spokesperson for Alzheimer’s disease.”
Stigma prevents full understanding of the disease
Alzheimer’s disease causes memory loss and problems with thinking and behavior. It causes 60 to 80 percent of all dementia cases, according to the Alzheimer’s Association, and while age is the best known risk factor for Alzheimer’s disease, it is not a normal or natural part of aging.
Scientists aren’t entirely sure what causes the disease in most people, but it’s probably a mix of genetic, environmental and lifestyle factors, according to the National Institutes of Health’s National Institute on Aging. Researchers are investigating whether things like a healthy diet, regular exercise and social engagement with mental stimulation could help reduce a person’s risk for the disease.
But stigma gets in the way of lifestyle changes and treatments to prolong the best functioning years of Alzheimer’s disease because shame or fear about the condition can prevent people from seeking help from their doctor when they or their family members start to notice small changes in cognition that could be a sign of disease. There’s even some misunderstanding among doctors, Rhoads explained, who mistakenly think, “Why get a diagnosis? There’s nothing we can do.”
It’s true that the degenerative brain condition gets worse over time, and while there are some treatments to stall symptoms, the disease has no cure. However, a comprehensive treatment plan that includes several medications, physical activity, social and mental engagement from family members and a healthy diet may help more people with Alzheimer’s extend the early stages of the disease, when quality of life can still be full and robust.
“People are afraid; they have this vision of late stage Alzheimer’s disease, and that keeps them from coming in to get an early stage diagnosis, which is when we actually have some room to intervene,” Rhoads said. “That’s one of the biggest costs of the stigma.”
The benefits of early diagnosis
As clinic director of the Memory, Aging and Resilience Clinic at UC San Diego Health, one of Lisa Delano-Wood’s biggest frustrations is encountering patients who only seek care at the latest stages of Alzheimer’s disease. By this point, Delano-Wood explained, the patient isn’t qualified for cutting edge clinical trials for Alzheimer’s disease treatments. Clinicians have missed an opportunity to suggest interventions that may slow the progression of the disease. And finally, caregivers, who are often a spouse or a child of the patient, may have lost years of support for their struggle, as doctors are well-placed to help them navigate the pitfalls in full-time caregiving.
Sometimes, cognitive impairment isn’t caused by any kind of brain disease, and can be rectified with simple changes to diet and medication. Infections, metabolic disorders, vascular issues or vitamin deficiencies can mimic severe memory loss, explains Delano-Wood, and treating these initial problems can often fully restore cognitive function. But people will never know the cause of their failing memory, or how to treat it, if they don’t seek help.
“Early diagnosis is critical if someone suspects they have memory loss outside of what is normal, or if they think their memory is much poorer than someone outside their same age,” said Delano-Wood. “I’d encourage them to present to their physician for memory screening and referral to either a neuropsychologist or a neurologist.”
How celebrities can help raise awareness about diseases
The effect that celebrities can have on disease awareness is significant and measurable. After Patty Duke and Muhammad Ali died in 2016, their families’ decisions to name sepsis as the cause of death may have helped contribute to Americans’ growing awareness of the disease. A Harris Poll commissioned by the advocacy group Sepsis Alliance found that sepsis awareness crossed the 50 percent threshold for the first time since the group started the survey in 2010, and that 32 percent of respondents who knew what the condition was had first heard of sepsis from news and entertainment media, as opposed to just 12 percent who learned about sepsis from a medical professional.
And in May 2013, when Angelina Jolie went public with her decision to get a double mastectomy after testing positive for the BRCA gene, which significantly increases the risk for breast cancer, referrals for genetic counseling related to breast cancer in the U.K. increased two and a half times in the months after the news hit the media.
Maria Shriver, whose father died of Alzheimer’s disease in 2011, has done a lot to raise awareness about the condition since his diagnosis in 2003. She’s written a children’s book called What’s Happening to Grandpa?, produced the HBO documentary series “The Alzheimer’s Project” and this year launched the Women’s Alzheimer’s Challenge, an effort to fund research on why the condition disproportionately affects women.
But perhaps the most prominent Alzheimer’s advocate was President Ronald Reagan, who made the decision in 1994 to come forward with his diagnosis of Alzheimer’s disease in its early stages. He wrote in a letter to the American people that he wanted to promote broad awareness of the disease, which is a leading killer in the U.S., as well as support his wife Nancy and and all caregivers of people with Alzheimer’s disease. Reagan also said that his and his wife’s experience going public about past experiences with cancer led to more cancer screening, which he hoped would be the same with Alzheimer’s disease:
Upon learning this news, Nancy and I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way.
In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing.
Delano-Wood wasn’t practicing medicine at the time, but said her mentors spoke of the influx of people suddenly interested in testing, screening and measuring a baseline level of cognition because of what they learned from Reagan’s letter — especially those with a family history of Alzheimer’s disease, like Reagan had.
More voices speaking out about the topic will continue to normalize Alzheimer’s disease, a condition that affects five million Americans, encourage people to seek treatment for memory problems, and help accelerate research for treatments and possible cure or vaccine for the illness, she said.
“[Reagan] taught a lot of people about Alzheimer’s disease ― that it could affect anybody and that nobody is immune,” she concluded.
However, more work needs to be done.
”There is still quite a bit of stigma that is attached to this terrible, neurodegenerative disease, which is unfortunate since it is so common in every society in the world.”