A University of Houston researcher is working to increase health literacy among Hispanics/Latinos (H/Ls) when it comes to Alzheimer's disease (AD). The largest ethnic minority in the U.S., at 18% of the population, H/Ls are 50% more likely to develop Alzheimer's disease than non-Hispanic whites. H/Ls also live longer, develop AD symptoms earlier, are diagnosed at later stages and are less likely to be treated.
Given those statistics, it's startling that Hispanics/Latinos comprise less than 1% of clinical trials for Alzheimer's disease.
"From a social justice perspective, in order to help reduce health disparities we need to involve these communities in the decision-making process," said Luis D. Medina, assistant professor of psychology. He will use a $2.35 million grant from the National Institute on Aging to build his "Engaging Communities of Hispanics for Aging Research Network."
"There are various barriers to getting involved in research, including health literacy or what people actually know about Alzheimer's disease. In the Hispanic/Latino communities, it is often thought of as just a part of aging," said Medina, who believes the solution begins with education.
The network will launch in two pilot cities, Houston and Denver. Step one is "boot camp translation" wherein community stakeholders are immersed in learning about the disease, and then the tables turn - the community members educate the trainers on how to speak to their communities.
"In boot camp translation we break down the medical jargon to consumable, understandable lay language and the community tells us how to do that," said Medina. "The communities have a lot of strengths that we, as researchers, may or may not have. We are hoping to put more seats at the table so that the communities are involved in research infrastructure and help drive research projects."
Steven Woods, UH professor of psychology and Jennifer Vardeman, UH associate professor of communication, are assisting on the project in collaboration with Baylor College of Medicine, University of Colorado School of Medicine, University of Nevada, Las Vegas and the Lou Ruvo Center for Brain Health at the Cleveland Clinic in Las Vegas.
Medina plans to expand the project to Las Vegas next as he creates a template for other cities to follow.
"This is about lifting all of us up and improving brain health. The more representative our research samples are, the better we can understand the disease," said Medina, who was recently invited to serve on the Alzheimer's Association International Research Grant Program Council to help craft funding opportunity requests for applications, provide expertise during grant review and make funding recommendations. The association is especially interested in Medina's input on issues related to the recruitment of underrepresented populations.