Some 5 million people that are living in the United States have been diagnosed with Alzheimer’s disease, a progressive brain disorder that slowly destroys memory and thinking skills, for which there is currently no cure.
“If nothing changes between now and 2050 that number will triple to almost 15 million people,” says Betsey Arledge, producer, director and writer for the PBS documentary Every Minute Counts.
The program, which premiered in January, told stories of the social and economic consequences of the disease through its victims and their caregivers. Among the show’s subjects is Daisy Duarte, a Springfield resident who has been the full-time caregiver for her mother, Sonja Cardona, since her diagnoses about six years ago. Two other families, one from Florida and another from New Hampshire, are profiled in the show.
A private viewing of the documentary is scheduled for next week in Springfield, after which Arledge and Duarte will participate in a panel discussion. Arledge spoke to KSMU about Every Minute Counts ahead of her visit.
“In Daisy’s case we filmed with her at home, we went with her to the doctor, when Sonya was getting a checkup, we came back later to see them at home again. We went with her to Washington when she went to talk to people in Congress,” says Arledge.
In total, she estimates her crew gathered between 40 and 50 hours of footage before trimming down to the final 1-hour program.
“It’s a huge commitment that people make. I am always in awe of people who agree to do this because it’s such a service that they do to the public,” she said.
Related coverage: The Fight Against Alzheimer's: A Springfield Caregiver's Story
About 12 years ago, Arledge created a similar documentary called The Forgetting, a comprehensive look at what Alzheimer’s is, and personal stories from those dealing with the disease. Since then, she feels a lot of attention has been given to the emotional toll of Alzheimer’s.
Every Minute Counts approached the disease from a different angle.
“We wanted to show people and tell people things that they didn’t necessarily already know. And to go beyond the personal stories that we see in the film to the impact that the epidemic is going to have on the entire country. And on our systems of medical care, of financing that medical care, and really the sort of ripple effects it’s going to have as more and more Baby Boomers get into peak risk years without any treatments or ability to stop this at the moment.”
The cost of treatment, according to Arledge, makes it the most expensive disease in the country, ahead of cancer.
“And that’s not because there are a lot of high-tech interventions like there are with cancer. It’s because it goes on for years.”
The average amount of time someone suffers from Alzheimer’s, says Arledge, can run from 5-20 years. Those in the final stages of disease require 24-hour a day care.
Arledge notes the 15 million people provided un-paid care to Alzheimer’s patients translates into 18 billion hours and more than $230 billion worth of care.
“If we don’t change the trajectory of this disease, if we don’t come up with some kind of treatment or a cure, it’s stunning what’s going to happen in the next number of years.”
She expressed optimism given the recent funding increases to the National Institute of Health (NIH) for basic Alzheimer’s research, including clinical trials. She noted, however, potential cuts to the agency under President Trump’s proposed budget.
Daisy Duarte is involved in one of those trials at Washington University in St. Louis. In 2014 she was informed by doctors she had a rare genetic mutation associated with early onset Alzheimer’s.
You can view the full program here. KSMU also visited with Duarte earlier this year, shortly after the program’s premiere. You can read our report and listen to our story here.
