Karen Wilder taps personal experience to raise awareness of Alzheimer’s

Though people of a certain age may jokingly attribute occasional forgetfulness as “old timer’s disease,” the realities of actual Alzheimer’s disease is hardly a laughing matter. According to the Alzheimer’s Association, this progressive brain disease affects an estimated 5.8 million Americans, and someone develops Alzheimer’s every 65 seconds. As the sixth leading cause of death in the U.S., it is far from a simple matter of occasional lapses in memory.

Rancho Santa Fe resident Karen Wilder knows the impact of the disease all too well. After all, it took her husband, the brilliant and beloved actor Gene Wilder, in 2016. “It’s truly the worst disease, I think,” she says somberly. “I say ‘despicable,’ because that really expresses it for me, because it takes everything from that person, slowly.” Recalling his initial symptoms, she says, “There were things that he did that were so out of character that I couldn’t quite understand what had happened, and when I went to talk to him about it, he couldn’t tell me.” She ultimately convinced him to see a doctor to be tested for “mild cognitive impairment,” but they weren’t prepared for it to be more than that.

Beyond the denial and subsequent anger that came with his diagnosis, Karen also learned the devastating effects of Alzheimer’s disease on caregivers. In an essay published in 2018, she reflected on his passing, citing a chilling statistic from a Stanford Medicine study that found 40 percent of Alzheimer’s caregivers die before the patient, she says, “from the sheer physical, spiritual, and emotional toll of caring for a loved one with Alzheimer’s.” The study also revealed that caregivers can experience mental health problems such as depression, anxiety, and substance abuse, along with physical health problems.

The Wilders were no different. When people would talk about putting a family member into a home, she remembers thinking firmly, “My husband’s not going to do that. I’m not doing that.” But the reality was more difficult, and the stress began to manifest throughout her body, from severe neck and shoulder pain to even impacting her digestion. “I overestimated myself, I believe. I didn’t know that my body would shut down on me like that. If I were doing that today, I’d say ‘what are you doing that for?’ I didn’t delegate authority and I really should have, and I think that would be my plea [to other caregivers],” she says.

Along with Warner Bros., Karen has provided Alzheimer’s Association permission to use Gene’s famous Willy Wonka likeness in their campaign. “They take a scene from Willy Wonka & the Chocolate Factory when the kids are starting to eat the candy and it disappears, and it is so poignant, it just brings tears to my eyes, and he’s so wonderful in it. I feel that is one thing that he would love to have done is [generate] awareness of Alzheimer’s and how to help,” she says. Karen will be honored at the Alzheimer’s Association San Diego/Imperial Chapter’s inaugural Imagination Ball, a Willy Wonka-themed gala, originally scheduled for March 27 at the Del Mar Country Club, which has since been postponed to a later date.

A Message From the Alzheimer’s Association San Diego/Imperial Chapter:

The health and safety of our constituents, volunteers and staff remain our driver as we address the COVID-19 outbreak and continue to pursue our mission, today and in the longer term. Given the evolving nature of COVID-19 and based on the guidance from the San Diego Health Department and CDC, we have made the difficult decision to postpone the Imagination Ball scheduled for Friday, March 27. This is a disappointing decision for everyone involved, but the hard work and support of our gala committee, donors and sponsors is greatly appreciated and recognized. Importantly, we are already looking at a new dates for the Imagination Ball and will share the new date as soon as possible. alz.org/sandiego