Blog Harvey A. Friedman Center for Aging

Community-engaged research: Bridging the gap between the “Haves” and “Have nots”

Written by Paige Julius, BS candidate at Lindenwood University, and participant in the 2023 Institute for Public Health Summer Research Program

Black/African Americans are two times more likely to be diagnosed with Alzheimer’s disease, yet the community is underrepresented in research. I have spent this summer working in the lab of Joyce (Joy) Balls-Berry, PhD. She is committed to promoting health equity and diversity in Alzheimer’s disease research through her COEQUAL study, which I have been a part of this summer.

Author , Paige Julius, left, participates in a community event

In order to recruit diverse populations, unique strategies are necessary. Community engaged research is focused on going into the community and working with them throughout the research process. This summer, we visited retirement centers, social service organizations, apartments, and other locations. We also hosted events called Brain Aging Cafes (BACs), events held at community centers that provide communication between researchers and community members. Participants engaged in a lesson about Alzheimer’s disease and research. They also participated in a discussion session where they could share their concerns and ideas related to health and research. During the discussion session, I distinctly remember one participant stating; “I think it is important for researchers to look at participants through an equitable lens. When questions are biased, it impacts the participant’s experience. We need a language that we understand.” This made me realize that members of this community want representation in research, but culturally sensitive approaches are necessary to get participants.

To see culturally sensitive programs in action, Marilyn Wilson, MSW, research specialist with the Knight ADRC, allowed me to tour an organization called Wesley House. They offer services to youth and aging people in St. Louis. I was able to interview John Saunders, executive director of Wesley House, who was a camp participant at Wesley House as a child and is now running the organization. They offer summer camps, STEM, and other free opportunities to youth, and offer free services to the aging community. Meals, transportation, exercise, and field trips are provided. They also conduct assessment calls to check in on residents in the community.  Saunders said “They’re [the residents] like grandmothers to me.” I admire Wesley house because they model what it means to support under-resourced communities.

Saunders explained that there is an obvious divide between the “haves and the have nots” in St. Louis. A common example is the Delmar Divide. According to an article published in the Washington University in St. Louis Political Review, the north side of Delmar street has a median household income of $18,000 and 98% of the population is black. South of Delmar, the median income is $50,000 and 73% of the population is white. Depending on the zip code St. Louis residents are born in, life expectancy can also vary up to seven years (shown in below figure.)

It is important to address the gap that exists between the “haves and have nots.” I learned that we must find innovative ways to bridge this gap. Wesley House, the BACs, and COEQUAL project are all examples of programs that are moving us one step closer to health equity and equality.