Black Leaders for Brain Health: A collaboration between Black community leaders and UW Alzheimer’s disease scientists

a red box with the University of Wisconsin crest and the text Black Leaders for Brain Health A collaboration of the Nehemiah Center for Urban Leadership and Wisconsin Alzheimer's Disease Research Center

African American leaders from local churches, civic organizations, academia and health groups are lending their insight — their lived experience — to UW Alzheimer’s disease research. The committee, Black Leaders for Brain Health, is a collaboration between the Nehemiah Center for Urban Leadership Development and the Wisconsin Alzheimer’s Disease Research Center (ADRC), and it connects local African American leaders with scientists and researchers in the fields of Alzheimer’s disease and related dementias and cognitive aging. 

Rev. Dr. Alex Gee, president of Nehemiah and senior pastor for Fountain of Life Covenant Church, Carey Gleason, PhD, MS, associate professor of medicine (geriatrics), and Fabu Carter, PhD, senior outreach specialist for Wisconsin ADRC, formed Black Leaders for Brain Health in 2019 as a resource to brain health researchers on campus. 

It was, as committee co-chair Gee described, born from the Black community and not as an afterthought to inclusivity or nod to diversity. As a caregiver to his mother who has dementia, Gee personally witnessed the effects of Alzheimer’s disease. And as a pastor and a scholar, he knows the impacts of Alzheimer’s disease in his community and how frequently members of the Black community are asked to help research studies, often in a way that is not productive to science or the research participants. 

“I told [Dr. Gleason] I wanted to impact the science of the disease,” he said. The committee’s roots in the Black community, Gee said, helps ensure the committee and scientist relationship is a collaboration and not an afterthought.

Black Leaders for Brain Health works to involve scientists in early stages before a study starts and members of the committee co-author papers. After an inaugural meeting in May 2019, the committee’s 12 members now meet virtually each quarter.

UW scientists are encouraged to seek Black Leaders for Brain Health’s input to review, advise and help improve their studies to be inclusive of Black people and the results from their research more relevant to diverse populations. The work is imperative because African Americans face an increased burden of developing Alzheimer’s disease and related dementias. African Americans are more than twice as likely as white Americans to be diagnosed with Alzheimer’s disease, and that diagnosis often arrives late in the disease progression, reducing the chance early interventions can effectively slow the disease.

At the first meeting of Black Leaders for Brain Health, Gee expressed a question to Gleason that she said has become a guiding point for her work. “He asked if the micro-aggressions and racism his mom faced throughout her life contributed to her getting Alzheimer’s disease,” Gleason recalled. “This group clarifies to me we’re not just doing science on people, we’re doing science with people. It’s about understanding what racism does to people’s bodies and minds.”

The committee’s input provides a richer understanding of the science behind Alzheimer’s disease, Gleason said. For instance, research literature typically categorizes people as “Black” and “white,” she said. But in the committee, there is a much richer discussion of what Black means — for instance, is the person a first generation African American, are they descendants of an enslaved person, are they a person with mixed race, and many more variables that do not fit into neat categories.

“This discussion helps with both precision and a fuller understanding of the science,” Gleason said.

A research paper co-authored by Gleason and Gee demonstrates how this fuller understanding of the science may come about. Using National Alzheimer’s Coordinating Center (NACC) data from more than 33,000 Alzheimer’s disease research participants who attended visits 2005-2017 at Alzheimer’s Disease Research Centers through the United States, Gleason and her study team found many African American participants were enrolled through community outreach, while many white participants were enrolled through memory clinic visits. The study team found this difference in recruitment source can result in study design flaws when examining Alzheimer’s disease risk factors facing both Blacks and whites. The team suggested a two-fold approach to recruitment: to use a community-based approach in all recruitment and to increase memory clinic access for African Americans.

Gleason said she hopes this paper, which is the first co-authored by a Black Leaders for Brain Health committee member, can be a tool for enriching the science of Alzheimer’s disease and related dementias. In science we like to think there’s no bias, she said, but having a better, enriched perspective guides the science in ways that can be more effective.

Carter recruits African Americans into Alzheimer’s disease research studies at the Wisconsin ADRC. She said she envisions Black Leaders for Brain Health as a map for scientists who may begin a study with an academic or scientific goal in mind, but not have an understanding of how that research goal will effectively be implemented in the African American community.

“As a person who has worked in non-profits, I always wished they had come to us first,” she said. “I could always see glaring holes that just didn’t fit us. Some studies are so important we need to be in on the ground floor, especially for those researchers who were wise enough to come to us and ask for input.”  

UW–Madison graduate student Elizabeth Evans, BS, recently sought the expertise of the Black Leaders for Brain Health and asked its members to consult on a study she is conducting. Evans, who is studying speech-language pathology, is researching the effectiveness of a drawing, called the Cookie Theft, frequently used in cognitive tests. In the drawing, three figures are shown in a 1950s-style kitchen. A woman wearing an apron and a dress washes dishes at a sink while two children are behind her, one of them reaching for a cookie from a cookie jar. This image is called a pictograph and this particular one is a tool in cognitive testing, where it may be used as a gauge to help determine the language and cognitive function of the person being evaluated. 

A person conducting a cognitive evaluation may ask a person being evaluated if they can identify and describe elements of the scene. Tests like this are an important part of cognitive testing because language, vocabulary and word retrieval are sometimes early indicators of cognitive impairment. A person experiencing signs of mild cognitive impairment or Alzheimer’s disease and related dementias may not be able to retrieve the correct words to describe the drawing. However, if the image they are asked to describe is not universally familiar to the person being evaluated, does that affect their test results? Evans examined these questions as part of her research in the lab of Kimberly Mueller, PhD, assistant professor in the Department of Communication Sciences and Disorders and investigator in the Wisconsin ADRC. Earlier this year, Evans brought her research study to a Black Leaders for Brain Health meeting for their input on how the picture may be perceived in the Black community and how the pictograph could be improved or redesigned. Committee member Diane C. Gooding, PhD, professor in the Departments of Psychology and Psychiatry, consulted on Evans’ study and co-authored a research paper based on the results.

“The beauty of this is we can impact science,” Gooding said. “In the past, white scientists, who were mostly males, used to create the measures, and studies based on predominantly white samples determined the norms,” she said. “But we’re saying, no wait, there are other types of samples, and the norms may differ somewhat, depending on the sample. You need to conceptualize who you study and how you study them. Without that awareness, you may not even know what questions to ask, or how to ask them in a culturally sensitive or relevant way.”

When the image was initially introduced to the group, Evans, Gooding and the committee members discussed how the image of a dated, suburban kitchen with people with white features is not necessarily a universally familiar image to a person who is not white or from the suburbs, and that could be affecting results of evaluations that utilize the pictograph. 

With the help of a graphic designer, Evans created two new pictographs: A drawing depicting people shopping in a grocery store and an image of a birthday party. Both images show people with variety in body type and people with facial features that are more diverse. The research study’s next step is to create a survey depicting the new images and asking community members their opinions on the new drawings, to help gauge their effectiveness as a diagnostic tool.

At a November 2020 meeting of the Black Leaders for Brain Health, Evans returned to the group to offer an update on the new drawings and ask the group’s recommendations on how to recruit African American participants for her study and how to compensate participants for taking the survey.

The current pictograph image was developed decades ago, she said. An updated image that is familiar to more people will help research participants feel more represented in research and also help lead to more accurate test results.

“The end goal is to create a test for detecting early cognitive decline that is more inclusive and representative of the community,” Evans said. 

Article by Claire Bitner