When Jane Krakowski starred in the 2016 Broadway revival of “She Loves Me,” her dad, for the first time in her Broadway career, wasn’t in the audience. He was home in New Jersey, nearing the end of his more than 15-year physical and mental decline from what was eventually diagnosed as early-onset vascular dementia, which involves cognitive decline caused by reduced or blocked blood flow to the brain.
“When that realization happened [that he couldn’t come to the show], it was kind of daunting and sad to me because I feel like my parents were a big part of my career growing up,” Krakowski, an Emmy-award winning actress well-known for her role in NBC’s “30 Rock,” told U.S. News.
But Krakowski, who was nominated for a Tony award for her role in “She Loves Me,” still found joy in performing the same show she’d watched her father, Ed, perform on a community theater stage when she was a little girl. Krakowski kept a photo of her dad, a chemical engineer, in her theater dressing room and would regale him with tales from Broadway when she visited him at home. “A light would go on inside of him when he would hear those stories,” Krakowski said.
Later, the two of them watched a PBS airing of her performance. He could still remember the music, but not his grandson’s name. He died soon after in his late 70s, about two years ago. “Losing a parent changes you … to anyone it does,” said Krakowski, whose dad taught her how to sing harmony and deliver punch lines with perfect timing.
The personal memory was one of many Krakowski spoke openly and emotionally about Monday, both during and after a media event marking AARP’s $60 million investment in the Dementia Discovery Fund, a venture fund launched in 2015 that focuses on discovering and developing effective new drugs for treating dementia. UnitedHealthcare and Quest Diagnostics partnered with AARP to invest an additional $10 million and $5 million, respectively, in the fund. In total, the fund, which is now closed, raised $350 million toward dementia research, $50 million of which came from Bill Gates.
Journalist Katie Couric emceed the event, which also featured AARP CEO Jo Ann Jenkins; Kate Bingham, a managing partner of the Dementia Discovery Fund; UnitedHealthcare’s chief medical officer Dr. Peter Pronovost; and technology and personal finance reporter and expert, Natali Morris.
“Dementia is not normal,” Jenkins said at the event, which kick-started AARP’s ” Disrupt Dementia” campaign. “Dementia robs too many people from living the life they want to live.” Indeed, there are nearly 10 million new cases of dementia and Alzheimer’s disease occurring globally each year; and by 2030, 82 million people worldwide are expected to have dementia, or “a constellation of symptoms” caused by a medical condition, most often Alzheimer’s disease, Pronovost explained. And yet, Jenkins added, “it remains not only incurable, but largely untreatable.” That’s frustrating American physicians, a new AARP survey reports, with 1 in 3 of those surveyed saying the current dementia treatment options are poor, and only 10 percent of them feeling extremely or very optimistic that effective treatment protocols will emerge in the next five years.
It’s a problem for family caregivers too, who provided 18.4 billion hours of unpaid assistance in 2017 to family members with dementia or Alzheimer’s disease, AARP estimates. “My mom had the biggest burden of being the caregiver and … I believe it is just as hard — and even possibly harder — on the caregiver than the patient for many of the stages,” Krakowski told Couric at the event. “The person who is aware of everything that is happening having to emotionally deal with it as well as physically get the patient through the day is extremely difficult.”
Krakowski’s mom eventually benefited most from joining a support group of other caregivers and later on, sometimes taking her husband, whom she met at age 13, to a nearby nonprofit where he enjoyed dancing and participating in other activities under the care of professionals trained in working with patients with dementia. “That gave my mom a few hours off, which is very helpful, even if it’s just to sit quietly for a minute or to take a walk around the block to get some air,” Krakowski told U.S. News.
The AARP event was the first time anyone from Krakowski’s family had spoken publicly about Ed’s dementia and death, but they felt it was important to raise awareness and hopefully funding about a condition that they learned firsthand remains poorly understood, slowly diagnosed and exceptionally painful and frustrating for patients and the people who love them.
“There is so much further to go,” Krakowski told U.S. News. “One of the things that was very frustrating to my family, as [it is to] many of the families who are afflicted with this … is that there aren’t that many answers and there isn’t that much medicine that makes a big difference, and there isn’t a cure yet. That’s where we’re aiming.”
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Health Buzz: Jane Krakowski Opens Way Up About Her Dad?s Dementia and Death originally appeared on usnews.com
