Alzheimer’s isn’t funny. But comedy can still be a weapon in the fight against this deadly degenerative disease.
Since 2012, comedian and filmmaker Lauren Miller Rogen and her husband, actor and comedian Seth Rogen, have used humor to help raise awareness for Alzheimer’s disease and funds for at-home caregiving through their nonprofit Hilarity for Charity.
Miller Rogen lost her grandfather and grandmother to Alzheimer’s. Her mother, Adele, started showing signs of dementia when she was just in her early 50s.
“It was devastating and scary,” Miller Rogen said of watching her mother experience early-onset Alzheimer’s, speaking at the STAT Future Summit on Thursday. At the time, she was in her early 20s and had just recently started dating her now-husband. Together, they watched as Adele deteriorated — losing the ability to speak and dress herself — before she died at age 68.
Before witnessing the effects of the disease firsthand, Rogen said, he didn’t realize how debilitating Alzheimer’s is. “I thought you, like, forgot where you parked your car. I didn’t think you forgot how to walk, how to eat, how to breathe eventually,” he said. “And I didn’t realize essentially how someone in the throes of dementia required 24 hours a day, seven days a week care and supervision.”
Miller Rogen’s father became Adele’s primary caregiver, but the experience also thrust the pair into some caretaking duties. Through that ordeal, they came in contact with a community of caregivers, many of whom were young people whose families were similarly upended by the disease. Some had to put their personal lives and careers on hold in order to tend to their loved ones with Alzheimer’s.
“My family really went through it and we saw what caregivers go through, and that really inspired our work at Hilarity for Charity,” Miller Rogen said. “The cost of care is so unrealistic for most people. It’s just so obscene that some people have to leave their jobs to care for their loved ones.”
A 2015 study in the Annals of Internal Medicine estimated the cost of care for someone with dementia in the last five years of their life at about $287,038.
Though the couple acknowledged how fortunate they were to be in a financial position to afford Adele the care that she needed, they said that isn’t the same reality for many people in their position. Through Hilarity for Charity, they try to ease that burden by providing people who are caring for someone with Alzheimer’s with professional caregivers who come to their homes and help take care of their loved ones. Over the years, they’ve heard from grant recipients who have told them how impactful that extra care is so they can make time for things like going to doctor appointments, stopping by the grocery store, or attending a friend’s birthday party.
As part of their charity work, the two organize an annual comedy event that brings together comedians like John Mulaney and Tiffany Haddish, as well as other A-listers like Snoop Dogg and John Mayer for a night of laughs and fundraising. So far, they’ve raised more than $20 million and provided more than 400,000 hours of in-home care to families in need.
“Caregivers are 24/7 carrying a huge load, and anything that we could do to lighten that load is what we want to do,” said Miller Rogen. “And I wish we could give more.”