Black Americans are roughly twice as likely as White Americans to have Alzheimer’s or another dementia, a disparity researchers are working to better understand while increasing participation from underrepresented communities.
Dr. Renã A.S. Robinson, a professor of chemistry at Vanderbilt University, addressed those challenges last week during the Norman R. Seay Academic Lecture series, titled “Measures to Achieve Equity in Alzheimer’s Disease Research” at Washington University.
During the community conversation, moderator Carol Daniels began by reciting sobering facts about Alzheimer’s. An estimated 7.4 million Americans age 65 and older are living with Alzheimer’s; about 200,000 Americans under age 65 have younger-onset dementia; almost two-thirds of Americans living with Alzheimer’s are women; and older Black Americans are roughly twice as likely as older White Americans to have Alzheimer’s or another dementia.
During her presentation, Robinson addressed the difficulties underrepresented communities experience amid those dire statistics.
Robinson leads RASR Laboratory in Nashville, Tennessee, a bioanalytical research group that uses advanced mass spectrometry to analyze complex biological tissues and study aging and age-related diseases such as Alzheimer’s. Her presentation was part of a two-part experience that included a “community conversation” at the Deaconess Foundation and an academic lecture at WashU’s Eric P. Newman Education Center.
Age is the biggest risk factor for Alzheimer’s, Robinson said. She predicted that because of an increasing older population, more people globally will face Alzheimer’s risk factors.
“This is a global crisis that we’re dealing with but especially in the United States, because the demographic of our aging population is changing,” Robinson said. “And the fastest growing group of individuals 65 and older are African American and Hispanic/Latino adults.”
Robinson addressed four key areas regarding Alzheimer’s: the current state of health disparities, strategies to reduce those disparities, opportunities to advance understanding of the disease and analytical measurements to advance Alzheimer’s research.
Sharing data from the Alzheimer’s Association, Robinson noted that a significant number of underrepresented adults have experienced discrimination and bias involving medical care and research.
“They reported that they continue to experience bias when it comes to our healthcare and hospital settings,” she said. “There are a number of individuals from these communities who may not want to participate.”
Robinson noted the long history of medical atrocities that have led to mistrust of the health care industry in America, which is “still an issue today,” she added.
Partnering with other universities and health care experts, Robinson and her team set out to figure out ways to engage underrepresented people in Alzheimer’s research. One project was the retrofitting of a semitruck trailer equipped with “brain-related interactive stations, activities and computer technology” that they take into different communities.
“This became a really good tool to help not only with engaging the community with what research was being done but I also engaged research teams and scientists who typically wouldn’t be present in those community settings,” Robinson said.
Another way her team at Vanderbilt set out to raise awareness was to get involved with teaching community members. They established a virtual and in-person Alzheimer’s prevention course at the university that teaches participants about such things as healthy eating, keeping an active brain, rest and relaxation and other preventive measures.
Robinson said the curious and engaged students challenge her to learn and understand more because “they ask really good questions about actions they can do or what resources they can use to combat Alzheimer’s.”
She also shared recent advances in research to identify relevant biomarkers for early Alzheimer’s detection, algorithms that distinguish how the disease may manifest differently among populations, what role plasma proteins play in the disease and how studying lipid data may help researchers classify and diagnose Alzheimer’s differently among racial groups.
“Desperate times call for desperate measures,” Robinson concluded.
Raising awareness and leveraging “positive storytelling messaging,” she added, can build trust among underrepresented groups while increasing research participation.
The community conversation included Daniels as moderator, Dr. John Morris of WashU’s Alzheimer Disease Research Center; Dorothy “Dotti” McDowell, a Knight Alzheimer Disease Research Center representative; and Dr. Joyce “Joy” E. Balls-Berry, a professor of neurology at WashU Medicine.
Morris stressed that research that includes all populations is a two-way street.
“We can’t ask people to give us their participation, their data, their blood and not give them anything. We have to give back,” Morris said. “We (must) be in places where people live and work. We are very cognizant about that and we are searching for ways to do that.”
When McDowell was asked by Daniels what “equity in access and practice” in Alzheimer’s research really looks like and how it can be achieved, she answered cautiously.
“Equity is more than just bringing people to WashU for research … it’s what we’re doing here tonight,” McDowell said, referring to the gathering. “WashU is not only for the community; we are in the community. We are very intentional about creating this conversation.
“Equity means being culturally sensitive and appropriate to the needs of our entire community.”
First convened in 2006, the Norman R. Seay Lecture series honors the St. Louis civil rights leader, community advocate and supporter of Alzheimer’s research.
Sylvester Brown Jr. is the Deaconess Foundation Community Advocacy Fellow.