ST. LOUIS — The Alzheimer's Association partnered with Washington University in St. Louis on Thursday, May 4 to explore answers to the question along with other health equity issues related to the disease. The event featured three researchers in St. Louis who aim to improve health equity in research, care, and support.
One of those researchers is Dr. Joyce Balls-Berry, an associate Professor of Neurology at Washington University in St. Louis. She recently received a $3.4 million grant from the National Institutes of Health to recruit Black Americans and other members of under-resourced communities into a registry for research studies, according to the Alzheimer’s Association.
“One thing that I can say about Alzheimer's disease and early detection is that African Americans are twice as likely to be diagnosed with Alzheimer's disease as some type of dementia compared to white counterparts in addition to Hispanic communities, which are about one and a half times more likely to be diagnosed with the disease,” Balls-Berry said.
“Typically, with communities of color, especially African Americans, we tend to be diagnosed with a more advanced form of the disease, so a lot of times that goes back to not having access to specialty care or even access to primary care for the referrals for specialty care to neurology.”
Dr. Balls-Berry talked more about how access to care affects the level of care and treatment available in African American communities.
“For instance, in the St. Louis area, it's often very hard for communities of color to gain access to neurology in order to receive the proper diagnosis of Alzheimer's disease and related dementia so that they can receive the treatment that they need,” Dr. Balls-Berry said.
“The other thing that tends to happen, especially in our communities, is we are at a higher risk for vascular disease, like cardiovascular disease, diabetes and the like, which puts us at greater risk for developing vascular dementia, and we know that if we reduce the risk for those vascular disease, like cardiovascular disease, then the risk for those types of dementia work will decrease.”
In 2019, African Americans were 30% more likely to die from heart disease than non-Hispanic whites, according to U.S. Department of Health and Human Services. Research from the same institution also showed that African American adults are 30% more likely to have high blood pressure, they are less likely than non-Hispanic whites to have their blood pressure under control.
In order to combat these barriers, Dr. Balls-Berry advocates for more minority participants in research to help the community and find better treatment options.
“I say engage, advocate, and even participate in research, in order to build trust, and that usually starts with us, with researchers, really inviting community partners, community members, patients, caregivers and even health and service providers to the table for us to design our studies in a way that reflects the needs of the community,” she said.
Dr. Balls-Berry also cited the history of unethical medical experimentation, which cultivates a culture of mistrust against the medical authority.
“I think for researchers, we must acknowledge the historical underpinning of bad science, like the syphilis experiment in the Negro Man here in St. Louis, the Cold War experiments, which happened in downtown St. Louis, really cause more fear for African Americans, especially to participate in science because we weren't asked whether or not we wanted to engage in that research, so I think one of the things that we do in my lab and my colleagues also do in their labs,” she said
“We really try to increase what we call health research literacy.”
Community Educator Arnesia Calk of Florissant also talked about her outreach about Alzheimer’s in the Black community.
“[In my community outreach], we discuss the warning signs, and a lot of people don't know those, we go over the full magnitude of what Alzheimer's disease is, and how it's impacting our community,” Calk said.
“I really try to personalize that, especially when going into African American communities because I'm African American as well, so I want it to really resonate with people to know, how our culture is taking the news of this disease and how we can kind of start to be able to move forward and work on preventative strategies as well as understanding that we have all of these resources that are not always talked about amongst our community.”
A few signs of Alzheimer’s disease include memory loss that disrupts daily life, poor judgment, leading to bad decisions and loss of spontaneity and sense of initiative, according to the National Institute of Health.
Calk went on to talk about the importance of diversity in research studies along with an issue with access to experimental medicine that can slow the progression of Alzheimer’s disease.
“We’re not diverse enough with the studies to see how medications and other forms of treatment are affecting people of color and anybody that's in an underserved and under-represented community, so it is definitely vitally important for us to make sure that we are relaying that message and bridging that gap so that we do have trust and to let people know that what we are doing to get the data that we need can be safe,” she said.
“Also, there’s amazing things that are happening when it's coming to the development of drugs and that specific class of drugs that's being blocked by the government right now for us to be able to have access to.”
The drug Calk is referring to is “Lecanemab.” According to a study published by the New England Journal of Medicine, the drug was used on people in the early stages of Alzheimer’s disease and researchers found that it slowed the progression of the disease.
“It was pretty upsetting because…that drug has shown a lot of promise,” Calk said. “Hearing that we're this close to something that could be potentially a cure or at least something to slow the progression or even just stop the disease in its tracks where it doesn't go any further is amazing to me, but it's also incredibly disheartening because of the fact that we're not allowed to have access.”