PITTSBURGH — Diane Powell understands what it’s like to watch a friend slip away.
Tina, a close friend whose last name she did not reveal, died from Alzheimer’s disease in her early 70s, just two years after its onset. Powell says her decline was rapid, radical and disturbing. By the time the progressive brain disease fully took hold, a woman renowned for her cooking skills could barely remember how to make a pot of coffee.
Powell, of Mt. Lebanon, Pennsylvania, is chair of the Pittsburgh chapter of Black Women for Positive Change, which advocates for education, affordable health care and anti-violence in the Black community. This was her first experience with Alzheimer’s disease.
Multiple studies have revealed widening disparities between Black Americans and white Americans in the prevalence and treatment of Alzheimer’s at a time when more people are at risk.
That’s why Powell and the Alzheimer’s Association have decided to team up for a campaign to connect local Black residents with the tools to seek treatment and support for the disease — before it’s too late.
A 2018 study conducted by the Chicago Health and Aging Project suggested that Black Americans are nearly twice as likely to develop Alzheimer’s compared with white Americans, and that the disease is underreported within the Black community. In an 18-year study of 10,802 individuals age 65 and older, Black participants were found to have a 1.9 times higher risk of developing Alzheimer’s.
According to the study, educational attainment plays a role. The study mentions racial disparities in educational achievement in the United States as a contributing factor, with socioeconomic circumstances such as poverty and poor-quality schools widening the gap between Black and white Americans.
“There is a reasonable body of evidence to suggest there may be cognitive health disparities disproportionally impacting African Americans,” said Dr. Jennifer H. Lingler, a researcher at the University of Pittsburgh who serves on the executive committee of the Alzheimer Disease Research Center.
Research suggests that making five lifestyle adjustments — including playing mentally stimulating games like chess — will decrease your chance of Alzheimer’s by 60 percent.
She said it is difficult to draw conclusions from the data because racial disparities are not just prevalent in Alzheimer’s diagnoses, but in research studies, too. A 2020 study published by Lingler and members of the Alzheimer’s Disease Research Center noted that Black Americans make up just 5% of participants in clinical trials and autopsies related to the disease.
“Our perspective in Pittsburgh is that much of the research is flawed because African Americans have been so underrepresented in clinical research,” Lingler said, “especially clinical research in Alzheimer’s disease.”
The study also found that Black Americans are often diagnosed with Alzheimer’s later, receive treatment later than people of other races, and pay more out of pocket for dementia-related medical care.
Jacqueline Winsett, left, of North Point Breeze, poses July 20 for a portrait at her home with her daughter Jacqueline Winsett Ruple in Pittsburgh. Winsett’s husband, Joseph, has suffered from Alzheimer’s disease and she and her daughter have taken care of him.
Blacks at higher risk, less likely to seek help