Daisy Duarte estimates that three quarters of her family have died from a genetic form of Alzheimer’s disease that takes hold in middle age. When her own mother became ill, Duarte closed the sports bar she owned to become her full time caregiver.
“She just had a heart of gold. And then to see her where she’s at now, it just hurts so much,” said Duarte, 41.
Duarte and her 61-year-old mother, Sonia, appear in an upcoming PBS documentary about the search for a cure to Alzheimer’s.
Sonia Duarte worked as a teacher’s aide in Chicago for nearly three decades, before her diagnosis in 2013. Alzheimer’s is the sixth leading cause of death in the United States, and she has a rare form of the disease that is caused by a genetic mutation.
Her daughter also has the gene. When a doctor asked her to take part in a clinical trial for an Alzheimer’s prevention drug at Washington University, she volunteered immediately.
“I told him there’s nothing to think about. I need to take a stand against this disease,” said the younger Duarte, who has also lobbied in Washington for the Latinos Against Alzheimer’s network. “You can talk about it all you want but if you’re not in a clinical trial we’re never going to find a cure for it.”
Once a month, a nurse drives to the Duarte’s home in Springfield, Mo., to give her a monthly medication. Once a year, she visits St. Louis for brain scans, cognitive tests and a spinal tap.
A group of Alzheimer’s researchers at WashU have zeroed in on families like the Duartes, in which multiple generations are affected. They hope that prevention measures that work for early-onset Alzheimer’s will also work in patients who begin to see symptoms after the age of 65.
“If you think of cancer, heart disease, HIV, they’ve all had significant improvements. In Alzheimer’s disease that hasn’t occurred,” said Dr. Beau Ances, the Duartes’ neurologist. “The last drug was approved 12 or 14 years ago.”
Alzheimer’s: Every Minute Counts airs Jan. 25 on PBS.
Follow Durrie on Twitter: @durrieB.