A new study examining older Black Americans’ perceptions of Alzheimer’s disease reveals a lack of awareness of the devastating condition. The authors propose strategies to support brain health in this population.
Lack of awareness about Alzheimer’s disease can undermine Black Americans’ ability to identify the potential risk of the disease and its impact on their community, according to Johanne Eliacin, PhD, Regenstrief Institute, US Department of Veterans Affairs and research scientist and researcher at Indiana University School of Medicine. study leader. Dr. Eliacin notes that the research team’s findings could contribute to the development of effective and culturally sensitive strategies to address racial disparities in Alzheimer’s disease.
“We asked study participants if they agreed, disagreed, or were unsure that Black Americans are at greater risk of developing Alzheimer’s disease compared to white Americans, and most were unsure. Still, Black Americans are at greater risk of developing Alzheimer’s disease than white Americans.” said Dr. Eliacin.
And when Black Americans are diagnosed, they often bear a greater burden due to the costs of managing the disease, the lack of support available for the patient and caregiver, and all the challenges associated with navigating the health care system for this very complex disease . Combined with sociocultural health determinants, many Black Americans are truly disadvantaged when it comes to coping with Alzheimer’s disease. We still have a lot of work to do.”
Johanne Eliacin, PhD, Regenstrief Institute
‘I don’t think too much [people] really think about it unless it affects them personally… some black people consider it a mental illness, [it] is taboo,” said one participant in the study.
Another commented: “I think there are whispers about it…. But I don’t think it’s known, and I don’t think it’s known how dangerous it is. …the black community doesn’t quite understand it. I think the implication. Not like cancer.”
A third said: “People come into our community and have no idea who we are and what we are all about. And they have made no effort to get to know our community, just relying on what the media has presented to them. because this is what the African American community should look like. And if that is your only source on the African American community, then you are extremely ignorant. It is being abused in all kinds of ways. For example, are you familiar with the wealth gap?…education gap?…the health care gap?…social justice issues…And if you have a problem with that, you’re not doing it right within an African American environment, because it will show.”
To promote a healthy brain, 72 percent of female study participants versus 59 percent of male participants reported engaging in mental activities, such as doing puzzles, and 75 percent of all participants reported practicing a healthy lifestyle .
“The Black Americans we surveyed and interviewed see themselves as playing an important role in keeping themselves healthy and supporting healthy aging. They want to do more and they want to have the tools to do so,” said Dr. .Eliacin. “They are ready to play a role, but they need more education in terms of the breadth of activities that could help support a healthy brain. They also need additional support to facilitate access to resources so they can engage in more activities for a healthy brain. support.
“They are eager to learn, but for brain health messages to be well received and have the greatest possible impact, we must increase the representation of minority groups in research and include members of the Black American community in the decision-making process and development of outreach programs.”
Based on the perceptions of study participants, the research team proposed strategies to promote brain health and increase awareness of Alzheimer’s disease among Black Americans:
- Invest in the well-being of the Black community across the lifespan.
- Proactively reach out to the Black community.
- Integrate information about Alzheimer’s disease and brain health into broader, culturally appropriate wellness campaigns.
- Improve health, healthcare and research equity.
The study is among the first to provide insight into the brain health views of Black Americans of lower socioeconomic status living in a Midwestern metropolitan area, a population often neglected or absent from clinical trials of the Alzheimer’s disease and other diseases. Dr. Eliacin notes that while there are many insights to be gleaned from this work that can be applied to others, there is a need for a large national study.
“Our study underscores the importance of developing culturally sensitive approaches that provide meaningful learning experiences about Alzheimer’s disease and brain health for Black Americans,” said study author Sophia Wang, MD, of Indiana University School of Medicine. “The self-reported differences between Black women and men participating in healthy lifestyles also highlight other sociodemographic factors, such as gender, that should be considered when developing and testing approaches.”
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Magazine reference:
Eliacin, J., et al. (2024). Black Americans’ perceptions of Alzheimer’s disease, a healthy brain, and strategies for promoting brain health. PEC innovation. doi.org/10.1016/j.pecinn.2024.100282.