Gary Williams thought he had found a glimmer of hope. Six months earlier, his wife, Gwendolyn – 64 and a retired education professor at Bowie State University in Maryland — had been diagnosed with Alzheimer’s. The disease, as Gary would come to describe it, was “a slow-moving train” in their lives.
He brought Gwendolyn to Johns Hopkins Medical Center in Baltimore, with his fingers crossed, looking for a study or clinical trial to help ease the nightmare they were living. He and his wife knew there wasn’t a cure for Alzheimer’s, but they wanted to contribute to finding one. There was no good news at Hopkins, though, where doctors said Gwendolyn’s illness was too advanced to be eligible for a drug treatment clinical trial. To enroll her would have been risky for her health.
Gwendolyn and her husband were part of a troubling narrative about African Americans and Alzheimer’s, one with onerous economic and social implications. Older African Americans develop Alzheimer’s at a higher rate than any other group of older Americans. They are about twice as likely as non-Hispanic whites to develop the disease or other forms of dementia, according to the Alzheimer’s Association, a group that focuses on research, care and education.
Though Gwendolyn ultimately didn’t qualify for a Hopkins trial, researchers fervently wish they could find more people like her who are at least willing to try. That’s because, as scientists scramble to find new treatments and maybe someday a cure, African Americans are nearly invisible in clinical Alzheimer’s trials: Despite representing more than 20 percent of the 5.5 million Americans who have the disease, African Americans account for only 3 to 5 percent of trial participants, according to researchers (the lower number is the one I heard quoted most often).