“If you want real change, you must start at the center of the community, and the center of the African American community has long been the African American church,” said Rev. Dr. Lamonte Williams, faith engagement director for the U.S. POINTER study and community liaison and outreach specialist at the Maya Angelou Center for Health Equity at Wake Forest School of Medicine.

Williams is the architect of the Faith Engagement Outreach Model. He explained that research institutions need to demonstrate to faith leaders how and why participation makes sense for community members, and work to earn their buy-in on the recruitment effort. From there, faith leaders can offer information to congregants and other members of their networks, to encourage enrollment.

“By utilizing the Faith Engagement Outreach Model, we expect the program’s trajectory to trend upward in the next six months from its current 11% people of color enrollment, aiming to our goal of 30%,” Williams said of the Rhode Island arm of the national study.

U.S. POINTER is a landmark two-year clinical trial designed to evaluate whether lifestyle interventions such as increasing physical activity and eating a healthier diet actually help to prevent Alzheimer’s in people who may be at increased risk of developing memory loss and dementia in the future. The study is actively enrolling 2,000 diverse participants at five sites across the country. The Rhode Island study site, which is co-led by Brown University faculty, is a collaboration between Butler Hospital's Memory and Aging Program, the Miriam Hospital, the Alzheimer's Association Rhode Island Chapter and the Alzheimer's Association Massachusetts/New Hampshire Chapter. There are 400 spots available in the study in Rhode Island.

The trial is based on a Finnish study that showed a Mediterranean-type diet, vigorous exercise, heart health monitoring and cognitive stimulation have a protective effect on cognitive function, explained co-leader Rena Wing, a Brown professor of psychiatry and human behavior and director of the Weight Control and Diabetes Research Center at the Miriam Hospital. Participants are randomized into either a self-guided or a structured group during the study. Both receive the same information, but participants in the self-guided group will choose how to implement it, while the structured group receives a more hands-on approach.

“We need to find out if people in the U.S. are able to make those changes — increase exercise, improve diet — and if so, if those changes will really help prevent Alzheimer’s here as it did in Finland,” Wing. “To do that, though, we need a study population that’s representative of the whole population. And that means we need more people of color.”

Despite the fact that African Americans are two to three times more likely to develop Alzheimer’s than white Americans, they represent only 5% of participants in clinical trials.

“There is a massive gulf between who is affected and who is involved,” Williams said.

Yet the reticence of people of color to participate in medical research is highly understandable, Williams said, as it’s rooted in a legacy of racism in America that includes the infamous Tuskegee syphilis study, in which Black participants were grossly misled and mistreated. This often comes up in conversation with congregants, he said, and it’s important to acknowledge their hesitancy and work to build trust. Williams argues that this model seeks to “put African Americans at the table and not on the table.”

One of the reasons Williams is so supportive of the U.S. POINTER trial, in particular, is that the interventions being tested are strongly beneficial for all participants: “There’s no medicine, no shots,” he said. “The prescription is simply to improve eating and increase physical activity. If nothing else, you improve health outcomes just by increasing participation.”

Local outreach

As the faith engagement coordinator for the local site, Jenkins is working directly with pastors to help raise awareness of Alzheimer’s among members of the Black community, and aid in building trust while passing along key information about the U.S. POINTER trial.

One way that he’s done this is through a series of “chat and chew” sessions in and around Rhode Island. Over a period of three months, faith-based leaders would gather over a meal and talk informally about the risks and symptoms of Alzheimer’s and the different ways that researchers are trying to slow or prevent cognitive decline.

They discussed what participation in the U.S. POINTER trial would entail and what specific benefits it would have for community members. Then it was up to the local pastors to spread the word.

“Our goal is to get local pastors excited about this issue and to want to engage their communities,” Jenkins said.

The strategy is similar to the one local medical professionals used when educating communities about the COVID-19 vaccine last year.

To help dispel vaccine hesitancy and the resulting health disparities among patients who identified as Black or Latinx, Jenkins collaborated with Dr. Katrina Byrd, a Brown teaching fellow in pediatrics. In addition to posting videos on Instagram, speaking on radio shows and answering questions on social media and Zoom, Byrd partnered with Black churches to hold online information sessions during virtual religious services.

“In the Black Christian community, news travels by word of mouth,” Byrd said. “Talking to people in a congregation is an opportunity to also reach their friends and family members who don’t go to church.”

Byrd, who helped organize a community vaccination event for people of color, has been instrumental in helping increase rates of immunization among vulnerable communities — in fact, as the pandemic continues, she’s still on that mission. But Byrd is also finding time to spread the world about U.S. POINTER, starting with the leaders and members of her own church, Congdon Street Baptist Church in Providence.

Zoom and social media have indeed been very effective communication tools during the pandemic, Jenkins said, and he plans to also use online tools to share information about Alzheimer’s with community members.

The pastors said the effort has been gaining traction since kicking off last October.

“Word is rapidly spreading, and people are excited,” Jenkins said. “They’re eager to learn how they can get involved.”

Not only that, Williams said, but people who are enrolling to participate are sharing what they learn about Alzheimer’s prevention with their families. Entire groups of people are changing the way they shop at the supermarket and the way they prepare meals, he said. The health benefits are becoming exponential.

“The faith-based engagement model is working,” Williams said. “And we’re going to continue to build on that.”