Building Equitable Access to Brain and Vision Care in Underrepresented Communities

Drive about 230 miles down Interstate 75 south of Atlanta—a stone’s throw from the Florida state line—and you’ll reach Valdosta, Georgia. Known for its hospitality and colorful azaleas, it’s also the home of Debra Tann, EdD, a certified dementia educator and founder of the brain health nonprofit Reminiscent.

Dr. Tann has made it her life’s mission to educate, empower, and encourage members of her community who are impacted by Alzheimer’s disease and related dementias. Underlying her drive for sharing knowledge is Alzheimer’s’ disproportionate and startling impact on people of color and women.

While scientists don’t know exactly what causes Alzheimer’s and other dementias, research has demonstrated time and again that age-related diseases do not strike all populations equally. Blacks, Hispanics, and women are all more likely to develop Alzheimer’s disease; Black people are also 3 to 4 times more likely to develop glaucoma than Caucasians.

In Valdosta, a city of 56,000 whose population is predominantly Black, there are additional barriers to accessing quality health care, including a lack of public transportation to get to medical appointments and a lack of health care providers of color. With a median household income of $32,595 and poverty rate of 32%, Valdosta exceeds the statewide prevalence rates for Alzheimer’s and related dementias.

Social determinants of health like education, income, and access to healthy food and places to exercise also contribute to Alzheimer’s risk, especially among Latinos and Blacks. These are the vital opportunities that are often inaccessible to lower-income communities and communities of color.

"Dementia does have a widespread impact amongst Black and brown people. These ubiquitous symptoms are less likely to be diagnosed by a health care professional among Black and Latinos/Latinas as compared to white people. Our nation's healthcare system—and specifically in south Georgia—often leads to disparities in diagnosis, access to and quality of care, and clinical trial participation," said Dr. Tann, who wrote a book called The Race of Dementia.

BrightFocus Foundation recently teamed up with Dr. Tann to address these health disparities in her hometown and beyond.

Our nation's healthcare system—and specifically in south Georgia—often leads to disparities in diagnosis, access to and quality of care, and clinical trial participation.

- Dr. Debra Tann

Building trust through sustained community engagement

On Jan. 21, BrightFocus Foundation and Dr. Tann hosted a free, walk-up community health screening fair in Valdosta, sponsored in part by AARP. Local volunteers performed memory screenings, vision tests, and blood pressure exams for community members. Attendees received a printout of their results that they could take to their doctor.

The event was just one of the global nonprofit’s many grassroots touchpoints designed to build trust, raise awareness, and provide meaningful information and services related to age-and-brain health to marginalized communities and set the stage for sustained and scalable outreach efforts to come.

“Over time, our goal is to achieve greater representation of underrepresented populations in clinical trials to better treat the precise health needs of these populations,” said Nancy Lynn, senior vice president of strategic partnerships at BrightFocus. “But far upstream of clinical trial participation, we can start supporting communities and building trust through sustained outreach and giving back.”

Since partnering with Dr. Tann last year, BrightFocus has supported dozens of ongoing community engagement opportunities in Valdosta, including offering complimentary fitness classes and training for community members, producing free informational webinars specific to the area, hosting community dinners and a holiday party for elders, and providing dementia training for caregivers.

“Outreach events like last month’s health screening are a critical first step to building trust among underrepresented communities and doctors, researchers, and other health professionals,” said Stacy Haller, president and CEO of the Foundation. “It is only through sustained engagement that we can expand access to clinical trials to underrepresented populations and further health equity to end these diseases for good.”

Health disparities are not slowing down

While Blacks and Hispanics are at increased risk for Alzheimer’s than non-Hispanic white individuals, they currently make up less than 10 percent of all active participants in Alzheimer’s disease and related dementias research studies and clinical trials.

Historically, clinical trials have studied predominantly healthy, young, or middle-aged males, frequently who were white, excluding underrepresented populations. The significant lack of health data on Black and Hispanic populations confirms as much. Only recently has action begun to improve diversity in clinical trials and clinical research.

“To build trust, we need to listen first, and validate the experiences of racism, discrimination and mistreatment that people of color have long endured and that have led to outrageous health disparities,” Lynn said. “We need to give back first – our information, our services, and our time – before we ask these communities to participate in research.”

Increasing access to mind and sight research and information

In 2021, BrightFocus launched Brain Info Live, a series of free, multilingual online and hybrid educational programs customized for diverse communities across the U.S. to help raise awareness about brain health and to educate communities about opportunities to participate in research trials. The Foundation works with local community leaders and partners to tailor the information and resources in these live-streamed programs for diverse racial and ethnic groups.

Brain Info Live is part of the Foundation’s efforts to create a sustained dialogue about Alzheimer’s and clinical trials that can reach people in their homes or senior centers; build trust over time among community members, families, clinicians, researchers, and other health professionals; and be responsive to feedback from people of diverse backgrounds.

BrightFocus Foundation is dedicated to reaching millions of people worldwide through its public outreach and education efforts around brain and eye health, including BrightFocus Chats, free, twice-a-month audio programs connecting individuals with vision diseases to doctors and researchers; virtual community groups; public service announcements; awareness outreach campaigns; and special events. This spring, BrightFocus will launch a free informational series, Zoom in on Dementia & Alzheimer’s, where participants can ask questions about the latest neurodegeneration research directly to leading medical experts.

Advancing science for good

For nearly 50 years the Foundation has shaped early-career scientists and advanced the field through travel fellowships for diverse scientists, global expert-led educational programming, and contributing to important scholarship. Of the Foundation’s 287 actively funded grants, nearly 45% are led by women and scientists of a non-white racial background.

Grantees are studying the impact of race and ethnicity across diseases of mind and sight. In 2021, BrightFocus’ Alzheimer’s Disease Research program funded researchers in Baton Rouge, Louisiana, who designed one of the first clinical trials investigating the benefits of exercise in combination with education for protecting brain health specifically among Black people aged 65 and older. Other funded research is focused on understanding the genetic variants and sex-based differences that increase risk of Alzheimer’s and investigating risk factors for primary open-angle glaucoma in people of African descent.

A recent article coauthored by BrightFocus’ Vice President of Scientific Affairs Dr. Diane Bovenkamp also offered a new way to narrow racial and ethnic disparities in Alzheimer’s research through the development of standardized electronic health records. This would allow clinicians to collect and share real-world data about Alzheimer’s and related dementias across diverse population groups including race, ethnicity, and geography. 

About BrightFocus Foundation

BrightFocus Foundation is a premier nonprofit funder of research to defeat Alzheimer’s, macular degeneration, and glaucoma. Through its flagship research programs—Alzheimer’s Disease Research, National Glaucoma Research, and Macular Degeneration Research—the Foundation is currently supporting a $75 million portfolio of 287 scientific projects worldwide. BrightFocus has awarded nearly $275 million in groundbreaking medical research funding since inception and shares the latest research findings, expert information, and English/Spanish disease resources to empower the millions impacted by these devastating diseases.  Join our community at brightfocus.org.