WINSTON-SALEM, N.C. (WGHP) — According to the CDC, Alzheimer’s disease is one of the top 10 leading causes of death in the United States. African Americans are disproportionately impacted, suffering from the disease at twice the rate of white patients.
The Maya Angelou Center for Health Equity in Winston-Salem works to figure out why that is and how they can lower those numbers.
Associate Director Dr. Allison Caban-Holt says they center their research around the genetics of Alzheimer’s disease in African American communities.
“There seems to be a lack of information about why we are at a greater risk for Alzheimer’s disease,” Caban-Holt said.
Some of the reasons for the lack of information are caused by several factors like healthcare inequities in minority communities and not knowing symptoms.
“Some of the signs and symptoms … of Alzheimer’s disease may be memory which when a person gets older, sometimes we accept that out of hand, not recognizing that memory loss itself is not a common symptom of getting older. Slowing down of our memory and it’s taking longer to recall something is a part of normal aging. But complete memory loss is not,” Caban-Holt said.
Many people also don’t know some of the underlying conditions that can trigger Alzheimer’s. Heart disease is one that is prevalent in African Americans.
In addition to educating communities on the signs and symptoms, Maya Center staff also stress the importance of participating in research studies.
While African Americans are more likely to end up with Alzheimer’s, they are less likely to be diagnosed than white patients. There are several reasons for this, including fear of medical abuse that stems back to other cases of medical malpractice in communities of color, including the Tuskegee syphilis study.
Staff at the Maya Center try to quell those fears by getting out into the community and talking to people in person.
“Much of the research that we do is community-engaged, which means that we work in our communities to give them access or to enhance access to research trials,” Caban-Holt said. “If we have research occurring but only specific groups are involved in that research then we really don’t know how medications or treatments are going to work in other populations. So it’s important that there is a representative, wide and diverse group that participates in research.”
The research process is a marathon, not a sprint. Recent signs of progress are found in the newly FDA-approved drug Leqembi.
This drug is the first major sign of progress in Alzheimer’s research in the last 20 years. Leqembi has been proven to slow the progression of the disease in people in the early stages. It costs around $26,500 a year but is covered by Medicare and Medicaid. You should speak to your physician to find out if it is right for you.
Although Leqembi is a major step in the right direction, it is not a cure.
“This is part of the reason to be part of the research that’s going on. For the Leqembi trial, African Americans only made up 3 percent of the participants in that trial,” Caban-Holt said.
Because of this, some of the side effects specific to African American patients are still unknown. That’s why the Maya Center emphasizes research in communities of color, hoping to get more people in those communities involved in the long but essential process toward a more permanent solution.
“I think it’s important that when we are working in our communities … they recognize that we are making progress,” Caban-Holt said.
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