Debilitating memory loss and cognitive challenges are among the hallmarks of Alzheimer’s disease, which affects an estimated 6.7 million American adults 65 and older. Black Americans remain underrepresented in clinical research and trials, which researchers say limits the understanding of the neurodegenerative disease in this demographic. Men fare worse.
“We’re almost invisible when it comes to being in these study populations,” said Robert Turner, a professor at George Washington University School of Medicine and Health Sciences in Washington, D.C.
Hundreds of active clinical trials and studies probe the complexities of the neurodegenerative disease, from testing treatments and interventions to understanding disease processes each year. Yet only 5% of Black adults participate in Alzheimer’s and dementia research, Turner said. Within that group, just 25% of participants are men.
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Across the country, efforts have emerged to educate Black Americans on brain health and increase their participation in research. The African American Advisory Board advises researchers at the Washington University in St. Louis on culturally appropriate strategies to engage Black adults in memory and aging studies.
Turner founded the Black Men’s Brain Health Initiative in 2000 and Pathways to Healthy Aging in African Americans makes its home at the Aging & Brain Health Alliance in Rutgers University in Newark, New Jersey.
Community members who reflect the racial diversity and personal experiences of the populations they aim to serve have been crucial to engagement efforts for both programs.
“Alzheimer’s and [related] dementia is growing at a very rapid pace,” said Turner, who’s also a caregiver for his father who has the disease.
Teaming up with the NFL, community organizations
By 2060, the number of Alzheimer’s cases in the United States is projected to reach 14 million, and cases among Black Americans is expected to increase four times over current estimates, according to the Centers for Disease Control and Prevention. Age is the highest risk factor for developing the degenerative brain disease.
Overall, Black people are twice as likely to develop Alzheimer’s than their white counterparts. They also are less likely to receive a diagnosis of the disease compared to white people, one study found. Access to more brain health information could potentially fight the trend.
Turner, a former professional football player, said the Men’s Brain Health Initiative evolved from a conversation with former Detroit Lions safety Ron Rice.
The two men noticed the challenges some NFL players had after retirement, struggling to cope with the consequences of long-term conditions like traumatic brain injury and concussions. Since then, the project’s mission has expanded to include increasing the number of Black men participating in studies.
Current and former NFL athletes like Jonathan Ledbetter who played for the Miami Dolphins and the Arizona Cardinals and Hall of Famer Will Shields have helped advance the aims of the project, which currently has a partnership with the NFL Alumni Association.
“They are the greatest ambassadors to reach out to the community,” Turner said, noting that professional athletes have outsize influence and platforms to talk about mental health, brain health and aging issues and could potentially inspire other men to do the same.
In addition to football players, the project has teamed up with universities, community organizations and churches to spread the word.
The initiative also organizes an emerging scholars program to support scientists studying brain health among Black men.
This year, organizers held the initiative’s annual brain health conference for Black men in Las Vegas during Super Bowl week and facilitated conversations about community partnerships, brain health research and the role of faith and religion in Black men’s brain health. Conference sponsors included the National Institute on Aging and the Alzheimer’s Association. Thousands attended either in person or online, Turner said.
A range of barriers prevents people of color from participating in clinical research, including fears linked to a history of medical misconduct levied against Black and brown communities, inaccessibility to clinical research sites and stigmas associated with illnesses, researchers note.
Through outreach, Turner discovered another reason.
“We asked, ‘Have you ever participated in a research project?’ Overwhelmingly, the answer that we get is ‘no.’ And people tell us because they’ve never been asked,” Turner said.
This year, the initiative formally launched a national directory to provide Black men with more information on brain health and research studies. Similar efforts served as inspiration, including the Black Women’s Health Study at Boston University.
The United States has several registries for dementia research, including the Alzheimer’s Prevention Registry.
Oftentimes, men wait until their arm is about to fall off to go and get care. We realized something has to be done.
Robert Turner, founder of the Black Men’s Brain Health Initiative
Some studies show that registries can potentially improve research recruitment. Barriers related to dementia studies include the inability to give informed consent and significant requirements on study partners, who provide patient support during the research process.
To join the project’s directory, a participant must be 18 or older and fill out an online questionnaire about education, ethnicity, occupation and more. Participants can opt out of answering certain questions if they feel uncomfortable. Once registered, a participant’s information may be shared with researchers if consent is granted.
The questionnaire can be found on the initiative’s website, and events like the brain health conference help raise awareness and encourage registration.
All men can sign up, but the initiative’s investing its attention on the recruitment of Black men.
A few hundred people have signed onto the registry so far, Turner said. The goal is to sign up at least 2,000 active participants.
Turner said the project also plans to partner with Xavier University of Louisiana, a historically Black college in New Orleans, for next year’s brain health conference. The project also is developing community science review boards, where community members can evaluate research materials and whether or not the language is culturally sensitive, appropriate and relatable.
The low rates of participation in clinical research restrict scientists’ ability to study cognitive decline among Black adults, igniting concern over racial disparities in geriatric health care as the Alzheimer’s crisis intensifies.
Turner recognizes that many men are already at a disadvantage.
“On every level, men have worse health outcomes than women,” he said. “Oftentimes, men wait until their arm is about to fall off to go and get care. We realized something has to be done.”
‘It’s wreaking havoc in the Black community’
More than 500 older Black adults from greater Newark have joined the Pathways to Healthy Aging in African Americans program at Rutgers since 2015. The program began as a community engagement effort in 2006 and has since grown to incorporate research. Members of local churches, mosques and public housing sites serve on a community stakeholders board, which decides how to distribute the program’s money and resources.
The studies at Rutgers are designed to help researchers understand why African Americans have high rates of Alzheimer’s disease and other forms of dementia and what can be done to address the health disparity, said Mark Gluck, a professor of neuroscience and public health and the director of the Aging & Brain Health Alliance, in an email.
Participation in a study will help researchers close important knowledge gaps on how to detect and prevent Alzheimer’s at its earliest stages.
“We share much of the data we collect on each participant with participants themselves so that they and their doctors can use this information to help improve participants’ health and medical care,” Gluck said.
Participants have joined to improve their brain health, reduce risk of dementia and support research on healthy aging. To qualify, participants must identify as Black or African American, be at least 60 and have no signs of mild cognitive impairment. They represent a range of socioeconomic, religious and educational backgrounds. About 59% of program participants are also pre-diabetic or diabetic. The cohort also has high rates of obesity and hypertension.
Alzheimer’s is a significant public health burden in New Jersey. Roughly 185,000 people 65 and older in the state have the disease, according to the Alzheimer’s Association. About 9% of people 45 and older have subjective cognitive decline. The disease is also prevalent in other states.
Growing up, Delores Hammonds of Springfield, New Jersey, never heard of Alzheimer’s and the way the disease can ravage lives. She made improving health outcomes for older Black adults her mission, joining the program as a community brain health educator and running a dementia caregiver support group.
Hammonds has encountered people struggling with an Alzheimer’s diagnosis. They’re afraid of the unknown.
“Families themselves can end up being in denial,” she said. “Nobody wants to face the fact that this is what I have.”
Glenda Wright became a community health brain educator for the program because members of her family had Alzheimer’s. “It’s wreaking havoc in the Black community,” Wright said.
A former employee of public housing, she’ll often visit apartment complexes for older adults, who often battle other health conditions like heart disease and high blood pressure. Wright encourages them to socialize and attend a “soul brain dance,” a riff on the long-running television show and line dance. Isolation is a known risk factor for Alzheimer’s.
“I decided to go and talk to each one of these housing groups, letting them know how we can minimize our risk, if we just do the right thing, as far as our bodies are concerned,” she said.
“That is my passion, because I want people, not just senior citizens, but I want people to live healthy, especially in the Black community, where a lot of our disparities are.”
She teaches them ways to stay physically active within apartment buildings if they can’t travel to a local gym, manage stress and the benefits of memorization exercises to keep the mind sharp. They can read a book, learn a language or play the piano.
“Your brain is like a muscle. You lose it. Or you use it,” she said. “I tell them that your brains can actually shrink from not using our brain.”
It’s been challenging to persuade some older adults to participate in research. “They’re very reluctant,” Wright said, adding these adults often refer to a distrust of doctors and the negative fallout from the Tuskegee syphilis study.
The key to overcoming this reticence is to present oneself as a relatable and trustworthy messenger, Wright said. During her brain health workshops, she shares stories of her mother and father, as well as values of work ethic and education, which she hopes will resonate. She urges folks to sign up for the program’s offering of cognitive testing.
More than common ground, the delivery is crucial.
“If you go up there, like a monologue, you’re gonna have people going to sleep,” she said.
“You’ve got to really get personal and you’ve got to let them know, ‘I understand who you are, understand what you go through, I understand that you may not have all that you would like in this life, that this is not a dead end, because you’re still alive.’”
This story was published with the assistance of the Journalism and Women Symposium (JAWS) Health Journalism Fellowship, supported by The Commonwealth Fund.
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