WISCONSIN — A growing study in Wisconsin is focused on understanding Alzheimer’s disease and its impact on the African American community. 

The study is expanding to include more participants and aims to bridge the research gap for a community that’s disproportionately affected by the disease. 

The “African-Americans Fighting Alzheimer’s in Midlife” study, or AA-FAIM, is the subset of a bigger study by the Wisconsin Alzheimer’s Institute (WAI). The goal is to slow down the disease in midlife and hopefully prevent it entirely. 

Currently, around 300 people are enrolled in AA-FAIM; researchers follow participants as they age. 

“This is what we’re really about is serving the community, having solutions that work for our participants and for the communities that they come from,” said Sterling Johnson, associate director of the WAI.

According to Johnson, AA-FAIM is becoming one of the bigger studies involving African Americans. He said that the community is underrepresented in research for predicting and treating dementia. 

The study collects cognitive data and lab tests and also emphasizes the inclusion of African Americans in biomarker research, a way to identify Alzheimer’s before a person experiences any symptoms.

“We know that this disease begins in midlife for many people, although it’s asymptomatic for maybe 20 years,” Johnson said.

The number of Americans living with the disease is growing, according to the Alzheimer’s Association. It noted more than six million people in the U.S. are living with Alzheimer’s.

By 2050, as more of the population ages, that number is expected to be almost 13 million. 

The association reported older Black Americans are around twice as likely to have the disease or other dementias as their white counterparts. That difference is a little lower for older Hispanics, who are 1.5 times more likely to have the disease or other dementias as their white counterparts.

But Johnson said researchers are not sure Alzheimer’s is necessarily the culprit in the Black community.

“I think when it comes down to it, we may find that Alzheimer’s itself may not be any more common than it is in non-Hispanic white populations,” Johnson shared. “That’s what we’re finding from the biomarker studies. Now, we really need to figure out that disconnect. Why is there more dementia prevalence in this community and how can we solve this puzzle?”

When it comes to research, he said there has been a history of communities of color being unfairly treated, which has created a trust issue. The WAI is working to change that by taking a different approach to this critical research; it’s giving participants a voice. 

That’s something Milwaukee resident Emonia Barnett said she appreciates about the study. She enrolled to honor her late father, who was diagnosed with Alzheimer’s. 

“They’ve always made me comfortable; they’ve always answered my questions,” she said of the study.

The results of participants’ tests collected in the AA-FAIM study are shared with each individual. 

“Sometimes you want to know: Is this just somebody making money or are we actually learning something from all of this?” Emonia Barnett said. 

Before Luther Barnett Jr. passed away, his daughter made sure his last years were good ones. 

“I wanted him to have a high quality of life, and I wanted him to have, if I can say this, fun. Just because he had that disease, I didn’t want him to suffer,” Emonia Barnett said.

As his caretaker, she continued to learn about the disease. Emonia Barnett said there needs to be more awareness and knowledge shared in the African American community.

“It’s getting us educated, taking away the fear, the stigma of the disease. It’s just a disease. I don’t think we’ve done enough on that,” she said.

WAI’s Milwaukee Regional Office plays a big role in trying to change that. A lot of time is spent on outreach and building trust in the community.

Celena Ramsey is a WAI research specialist in the Milwaukee office.

“... When we’re out, I might meet the same people three or four times before they actually stop to listen and want to participate in the study,” she said.

Ramsey helps with recruitment, enrollment and cognitive testing of AA-FAIM participants. The study also focuses on making sure people have access to resources. 

“We know quality of care is different in different areas, different communities. A lot of people are not receiving those services,” Ramsey said.

She said she tries to be a liaison for whatever needs participants have.

“It’s not just about the research; it’s about overall uplifting and helping the community. Personally, it makes me feel good to know I’m part of a bigger cause,” she said.

A renewed grant from the National Institutes of Health will be used by the WAI for its Alzheimer’s studies. Some of that funding will support enrolling an additional 200 participants in AA-FAIM over the next five years. 

You can find Alzheimer’s resources in your community, here.