Gene Wilder's Death Reveals a Scary Truth About the Fight to Cure Alzheimer's

August 29th 2016

Lucy Tiven

"Willy Wonka & the Chocolate Factory" star Gene Wilder died Monday due to complications from Alzheimer's disease.

His nephew Jordan Walker-Pearlman wrote a moving statement about Wilder's passing, which was tweeted by ABC News correspondent Clayton Sandell. In the statement Walker-Pearlman explained that Wilder decided to keep his disease a secret for the three years leading up to his death.

And while Wilder's decision to keep his Alzheimer's diagnosis private was his own (and reportedly motivated by his wish to keep people smiling), Wilder's passing opens up a much needed conversation about Alzheimer's — about research and the stigma that surrounds the disease.

Walker-Pearlman described why the actor kept his disease under wraps.

“The cause was complications from Alzheimer’s disease, with which he co-existed for the last three years,” Walker-Pearlman wrote. “The choice to keep this private was his choice, in talking with us and making a decision as a family. 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. It took enough, but not that.”

gene wilder

“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,” Walker-Pearlman explained.

Every minute, an American is diagnosed with Alzheimer's disease, "an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks," the National Institute on Aging explains.

Over 5 million people in the U.S. live with Alzheimer's disease, according to non-profit organization the Alzheimer's Association. Alzheimer's is the sixth leading cause of death in the country and takes the lives of over 700,000 people each year.

The disease's prevalence is expected to triple among Americans age 65 and older by the year 2050, Science Daily reports.

Medical researchers are searching for ways to reduce the disease's impact over time.

“I think it is unlikely that we will find the ‘silver bullet’ against Alzheimer's disease,” Dr. Thomas J. Grabowski, Jr., the Director of the University of Washington’s Alzheimer’s Disease Research Center told ATTN: over email. “However, I think it is likely that we will identify treatments to reduce the impact of the different pathways, like amyloid toxicity and inflammation, that occur in Alzheimer process. In the future, people may live alongside Alzheimer disease on several medications without progressing inexorably to dementia, much like people with HIV infection no longer progress inexorably to AIDS.”

Alzheimer's disease is thought to occur due to a clumping mechanism that happens when beta-amyloid proteins in the brain group together, blocking cell-to-cell signaling and even killing disabled cells, the Alzheimer's Association explains. This can happen decades before symptoms of Alzheimers are present, Genevieve Wanucha, a science writer at the University of Washington's Memory and Brain Wellness Center told ATTN: over email.

Today's Alzheimer's treatments don't stop the death of brain cells, but can treat symptoms like memory loss and other cognitive difficulties, according to the Mayo Clinic.

“Current proven treatments are mostly limited to replacing neurotransmitter chemicals that are deficient in Alzheimer disease, to help surviving nerve cells function better,” Grabowski said. “The effects are typically quite modest and unfortunately do not delay the neural degeneration. Treatment is also available for conditions, for example depression, low thyroid function, or sleep apnea, that make memory loss and dementia worse.”

Much of today's research is geared toward recognizing and treating Alzheimer's early on, Grabowski explained.

“I think the most promising work currently is aimed at early intervention on amyloid protein processing, to either remove it, reduce its formation, or prevent its downstream effects,” he explained. “That said, I think there are probably other pathologic processes going on, and the most important ones may vary from person to person. Research aimed at understanding and exploiting this person to person variability is another promising direction.”

But families are often hesitant to bring up the disease due to the stigma it carries — which can mean patients miss out on early treatment that would greatly benefit them.

“In my experience, a sense of stigma around Alzheimer disease is quite common,” Grabowski said. “Most people, including many doctors, do not distinguish between Alzheimer disease and Alzheimer dementia, yet dementia is only a late chapter, and there is much benefit for individuals and society in early diagnosis.”

“If we are to prevent AD dementia, we will have to intervene at the earliest stages, and to do that, we need to challenge the stigma,” he explained. “We believe it is possible for persons with memory loss to live well, and the earlier we can make a diagnosis, the more effectively we can help them do so.”

"The stigma is associated often with suffering, loss of mind, loss of independence and disability," Angela Lunde from the Mayo Clinic Alzheimer's Disease Research Center writes in a blog post. "The fear of this stigmatization may delay patients and their families from seeking a medical diagnosis — even as the symptoms become blatantly obvious. The word Alzheimer's can stir up such intense fear that it can inhibit any discussions of it with friends and even some family members."

Lunde described three myths surrounding Alzheimer's: that it's just normal aging, and that people with Alzheimer's are always violent and aggressive and cannot function or live meaningful lives.

"They can achieve a renewed sense of purpose," she argues. "Earlier diagnosis and medications are helping with this. People with early stage Alzheimer's want to get the message out that they're living with Alzheimer's, not dying from it. In the later stages of the disease, those with Alzheimer's who are treated as whole human beings in positive environments can still give and receive great love, participate in activities and share moments of joy and laughter."