Screenshot from Alzheimer’s: Every Minute Counts
In a cluttered living room in the suburbs of Springfield, Illinois, Daisy Duarte’s mother, Sonia, sits in her wheel chair, regarding a woman in black scrubs and looking as if she were trying to remember something. Sonia has lived with her daughter, who finally recruited the help of a hospice nurse, for the past five years, losing her memory, her thinking, and her functioning to Alzheimer’s disease.
Alzheimer’s: Every Minute Counts, the Twin Cities PBS (TPT) documentary airing on January 25, examines how the degenerative brain disease affects three families. Building off an Emmy win with 2004’s The Forgetting: A Portrait of Alzheimer’s, which aimed to introduce the nation to Alzheimer’s, TPT re-enlisted director Elizabeth Arledge to broaden the scope—to uncover the wider social and economic implications of the incurable disease.
After all, if the biggest cause of Alzheimer’s is age, then the tsunami of aging baby boomers threatens to bring today’s five million Alzheimer’s cases up by more than 50 percent by 2030. As the most expensive disease in the U.S., this spike could bankrupt Medicaid and Medicare, costing the federal government over a trillion dollars by 2050.
Arledge outlines all of this in the 60-minute documentary, opening with an unsettling series of real phone calls taken by the National Alzheimer’s Association’s helpline in Chicago.
“I don’t want it to escalate any more, to get any more violent,” one voice says. Another: “He shouldn’t be driving, but he does. There’s no getting the keys away from him.” Another: “She thinks I’m her mother. Our roles are reversed. So, what do I do?”
The three personal stories—of a son navigating the costs of care, a mother facing limits to her independence, and a daughter putting her life on hold for her mother—put faces to the crisis. Daisy, for example, had to shut down her sports bar to look after her mother full time. Living off her pension, she thought she could do it alone. But she at last sought help from a nurse and a volunteer, noting, “You need it. Even though you say you don’t need it, you do need it.”
Gerry Richman, vice president of TPT, wanted to delve into the emotional and monetary expenses of Alzheimer’s about two years ago, when he found the statistics about the cost of the disease.
Richman noticed that while diseases like diabetes, AIDs, and heart disease have garnered more and more federal attention over the past 20 years, Alzheimer’s research has little to no funding. “People who have Alzheimer’s generally can’t go and march in Washington, or knock down the doors of Congressmen,” says Richman.
Daisy visits Washington toward the end of the film, planning to tell the country’s representatives about her mother. But she finds the men and women of Congress bringing her photographs of their own loved ones, telling her about their experiences with family members who had the disease.
“This is such a non-partisan issue,” Richman says, who is working with Dementia Friendly America (DFA) for outreach following the film’s premiere. Grown out of Minnesota, the initiative works with different communities, including clinical and business sectors, to eliminate stigma by teaching people how interact with those affected by Alzheimer’s. “We’re people first and the disease second,” says Olivia Mastry, a leader at DFA.
The organization will participate in a panel after the documentary screens at the TPT studio. In collaboration with TPT, DFA has developed online resources at pbs.org that detail symptom recognition and ways to encourage healthy brain aging. DFA’s website also provides a toolkit for convening communities to educate them on how to live with those who have the disease.
Richman, who was inspired watching his father care for his mother after she was diagnosed, hopes the documentary delivers a wakeup call.
“People’s eyes do light up,” he says of people’s reactions when he tells them about the Alzheimer’s epidemic. “They were as clueless as I was.”
Watch Alzheimer’s: Every Minute Counts January 25 at 9 p.m. CT on TPT. Learn more about the documentary at pbs.org.