A $25,000 grant, awarded to the Charles R. Bantz Community Scholar recipients, will support a project that aims to increase diversity in Alzheimer's disease research trials and promote cognitive screening in minority communities.
"When many people hear the phrase 'Alzheimer's disease research,' they think of research involving a brain scan or drawing blood to measure changes in markers for the disease," Dr. Sophia Wang said. "This is a different type of research. This is research for communities, particularly those who have been historically underrepresented in Alzheimer's disease research, and how researchers can communicate more effectively with those communities about Alzheimer's disease prevention, diagnosis and management."
Bantz Community Scholar awards are granted for one year to support a collaborative research team to address a pressing community issue in Central Indiana.
Wang, an associate professor of clinical psychiatry in the IU School of Medicine and leader of the Indiana Alzheimer's Disease Research Center's Outreach, Recruitment and Engagement Core, and Veronica Derricks, an assistant professor of psychology in the School of Science at IUPUI, won the 2023 award for their brain health education and Alzheimer's research project.
Veronica Derricks. Photo by Indiana University "We know that Black, Hispanic and Latine adults in the U.S. are more likely to be diagnosed with Alzheimer's disease and related dementias, and that they tend to be diagnosed at later stages of the disease relative to white adults," Derricks said. "These statistics are incredibly troubling and point to a need for prevention and early detection.
"There are so many educational materials about Alzheimer's disease, but there aren't a lot that specifically focus on what community members want to hear and what information is important to them."
Wang and Derricks said their interdisciplinary collaboration is central to the project.
"I have expertise in understanding how racially minoritized adults respond to messaging and how different types of messaging can be used to effectively engage a target audience, as well as messaging that might backfire," Derricks said.
"Sophia has the expertise in understanding how Alzheimer's works, what treatments are available, the importance of cognitive screening - the disease-specific knowledge that is important for developing the best educational curriculum. So, this collaboration is really rewarding in terms of bringing different backgrounds and perspectives together."
Sophia Wang. Photo by Indiana University "I'm learning quite a bit from Veronica. It has been a really humbling experience for me as a clinician," Wang said. "As physicians, we are trained to tell our patients what they need to do - how to take medications, exercise and eat healthy. But what we physicians have not been trained in is how to communicate this information well. And we are not trained to asked ourselves, 'How can we communicate more effectively to our patients, so they engage in behaviors that are healthy for them?' That's the key question of our Bantz award.
"Listening to our community members has taught me about the types of messages that they want to hear to feel inspired to be engaged to reduce their overall risk of getting Alzheimer's disease. Most importantly, communities need to see themselves and hear their voices in the messages to feel that inspiration."
Researchers are partnering with the John Boner Neighborhood Centers, Edna Martin Christian Center and the CICOA Aging and In-Home Solutions Resource Center to facilitate interviews with Black, Hispanic and Latine adults to get feedback about Alzheimer's educational materials. The goal is to tailor information to needs identified by participants and ensure that their voices and perspectives are heard in the materials.
"Our focus is on empowering community members - not just telling them what they should be doing but increasing awareness and working together to try to understand Alzheimer's and reduce the racial gaps that we're seeing in disease rates," Derricks said.
Researchers will also seek to learn more about attitudes toward cognitive screening. They hope to identify barriers to participation and will offer free cognitive screenings to those who are interested and willing.
"One aspect that makes this project different from many other Alzheimer's disease research projects is that we emphasize that our community members are empowered to make choices," Wang said. "For example, we will be providing information about cognitive screening. If community members decide that they do not want to do the cognitive screen at this time, we respect this choice, and more importantly, we want to know why they are making that choice.
"This gives communities an opportunity to feel empowered to tell us what they do not like about the cognitive screening process. We can use this information to develop more equitable and culturally sensitive approaches for the early detection of Alzheimer's disease."
Top from left, Jon Boner Neighborhood Centers and Edna Martin Christian Center. Photos by Tia Broz. Bottom, CICOA Aging and In-Home Solutions Resource Center. Photo provided by CICOA Aging and In-Home Solutions. The $25,000 grant will be used to support the community partners involved with the project.
"There's a lot of work that goes into the project in terms of working with community members," Derricks said. "Having staff available to coordinate everything and help with scheduling participants is important for the project to run smoothly and to make sure that we can do this work well. It's also important for us to ensure that we're adequately compensating people for their time.
"I really appreciate the campus for providing this opportunity. It signals that they not only value this type of research, but that they're invested in the community around IUPUI."
Wang said the ultimate goal is to help as many people as possible.
"I really enjoy providing that one-on-one care for my patients," she said. "But to have a widespread impact on the community, we must think about how to take the expertise of a few dementia subspecialists, such as myself, and scale it up. This work is critical to us figuring out how we reach an audience of 10,000 people across central Indiana and even the entire state to send this critical message about the importance of early detection of Alzheimer's disease in diverse communities.
"Our society is aging, and we want people to continue living in the community as they age. This project is the first step toward helping us better understand what communities want in order to feel more empowered to be proactive about their brain health, and how we can effectively work together to reduce their overall risk of Alzheimer's disease."
