Photo By Shayan Asgharnia
Seth Rogen and his wife, Lauren Miller Rogen, were in the early stages of dating when her mother was diagnosed with early-onset Alzheimer’s at age 55. “I had no experience with the disease,” says Rogen, 43, whose hit series “The Studio” recently won 13 Primetime Emmy Awards, including outstanding comedy series, “and honestly, I don’t think I was even capable of imagining what was to come. It’s absolutely not like what you see on TV.”
“There’s this saying: ‘If you’ve seen one case of dementia, you’ve seen one case of dementia,’” says Miller Rogen, 44. “Everyone’s experience is different, and every stage brings new challenges.” For her mother, it began with finding solutions for her agitation. “She would walk around the house yelling for hours on end. My dad was covering the windows so she wouldn’t be agitated by her reflection or anything outside,” she explains. “Later, when she became incontinent but wasn’t readily accepting support for it, he lined the floors with plastic.”
They installed a lift in the house so her father wouldn’t have to carry her, but as life became more difficult, they eventually moved her parents from Florida to Los Angeles to be closer to them, purchasing a duplex so her father could live on one side, and her mother on the other with 24-hour care. “He could join her for meals, take her for walks, and be right there, but also get decent sleep, eat a full meal and decompress when he needed to," Miller Rogen says. We were so fortunate to afford this level of personalization. It didn’t solve everything but it made life more livable for everyone. The biggest change I saw was physical — he was less exhausted and overworked,” she says.
In 2012, Rogen and Miller Rogen's experience inspired them to found Hilarity for Charity (HFC), a nonprofit dedicated to supporting families affected by Alzheimer’s and other types of dementia, such as Lewy body dementia — a brain disorder that also causes cognitive decline and has no cure. After his death in 2014, it was revealed that the late actor Robin Williams had suffered from Lewy body dementia.
HFC’s signature fundraising events are star-studded comedy shows. With the money raised, the nonprofit offers caregiver relief programs, online support groups, youth advocacy initiatives and other services for families affected by Alzheimer’s. Comedians who have performed over the years include James Corden, Sacha Baron Cohen, Tiffany Haddish, Sarah Silverman, Michael Che and John Mulaney, among many others. They’ve also featured performances by Miley Cyrus, Post Malone, John Mayer and the Backstreet Boys, and celebrities such as Samuel L. Jackson and Michael J. Fox have appeared onstage to share their personal experiences.
Photo Courtesy of Hilarity for Charity
“People have been so generous,” says Rogen. “We’ve had some of the most famous, successful, busy people show up to support HFC, and that’s been really special. Unfortunately, you don’t have to go too far to find someone affected by dementia, so a lot of folks bring a personal connection. We just want to keep making progress using pop culture, entertainment and comedy as tools for change. We’re comedians — it’s what we do. Over time, we’ve learned that our caregiver audience appreciates and even needs humor. People tell us all the time that HFC is a warm place for serious business — which is a nice way of saying you can laugh here about something really sh--ty and not feel like a horrible person.”
“There’s the saying, ‘Humor is the best medicine,’” he adds. “It’s not. Medicine is the best medicine. But humor is important and goes a long way in bringing light to a dark subject. Generally, people find HFC in a state of overwhelm and isolation and come to find the irreverent, free and flexible support we provide.”
HFC’s grants — which families can apply for — help pay for professional in-home care so caregivers can have time for themselves. Says Miller Rogen, “Our family was shocked by the price of good care for my mom. We recognized early that while we were exceedingly privileged to have the financial means to provide around-the-clock, professional, in-home care, for most people, it’s impossible.”
To date, HFC has donated 530,000 hours of in-home care, created 45 virtual support groups facilitated by accredited professionals, launched 84 chapters of youth advocacy programs and developed an evidence-based brain health curriculum completed by more than 12,000 people. “Our support groups have always been online and tailored to specific demographics,” Miller Rogen explains. “People caring for a spouse are in a different group than people caring for a parent. There are groups for people who consider themselves chosen families, and there are groups in Spanish. The goal is for people to find others whose circumstances mirror their own.”
Education is especially important, she continues. “So many people are managing the experience of losing a loved one while also wondering, ‘Is this going to happen to me?’ When my mom got sick, our family started our own brain health journey.
We learned that Alzheimer’s can begin in the brain 20 to 30 years before symptoms appear. We determined our genetics, adopted brain-healthy habits and began sharing with our community that it’s not the old person’s disease you think it is. The key is knowing your family’s medical history. Most forms of early-onset are hereditary. Knowing your genetics can help you tailor habits to delay or even prevent early-onset — or at least understand what to expect and when. Early intervention also makes you more eligible for clinical trials and gives you access to experts, guidance and experimental treatments.”
Photo By Dan Arnold for Hilarity for Charity
HFC’s brain coursework and leadership training for high school and college students include online programs that explain Alzheimer’s in depth, discuss its stages and offer tips for prevention and risk reduction. Some are led by Rogen himself, while others feature celebrities such as “Abbott Elementary” creator Quinta Brunson, Kristen Bell and Olympic gold–medal–winning snowboarder Chloe Kim.
Rogen has testified before Congress, sharing his experience of the mental, emotional and financial strain the disease places on families and advocating for better care policies and funding for research. The organization also has a team of scientific advisors made up of world-renowned researchers, practitioners and educators. “We’re constantly learning from them, checking our work with them and finding hope in their efforts,” Miller Rogen adds.
In her advocacy, Miller Rogen emphasizes the importance of self-care, which she herself initially neglected. “Eventually, I joined a support group and started going to therapy. I had a great network of friends. I traveled. When my mom was diagnosed, she told me she did not want me to stop living my life. That was such a gift. It helped me make choices with less guilt.”
She continues, “I would say, if you’re able, get into therapy, find a support group, reach out for help. The emotional challenges of dementia caregiving are not to be managed alone — and despite how it may feel sometimes, you really are not alone.”