Study reveals gaps in Alzheimer's knowledge

A new study examining older Black Americans' perceptions of Alzheimer's disease has found a lack of awareness of the devastating condition. The authors propose strategies for supporting brain health in this population.

Absence of awareness of Alzheimer's disease may undermine Black Americans' ability to identify potential risk of the disease and its impact on their community, said Johanne Eliacin, PhD, Regenstrief Institute, U.S. Department of Veterans Affairs and the Indiana University School of Medicine research scientist and study leader. Dr. Eliacin notes that the research team's findings may contribute to the development of effective and culturally sensitive strategies to address racial disparities in Alzheimer's disease.

"We asked study participants whether they agree, disagree or are unsure that Black Americans are at higher risk of developing Alzheimer's disease compared to White Americans, and most were unsure. Yet 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 have a greater burden because of the costs of managing the illness, lack of available support for patient and caregiver and all of the challenges of navigating the healthcare system for this very complex illness. Combined with socio-cultural determinants of health, many Black Americans are really disadvantaged when it comes to dealing with Alzheimer's disease. We still have a lot of work to do."

Johanne Eliacin, PhD, Regenstrief Institute

"I don't think too many [people] really think about it as much unless it hits them personally…some Black people look at it like mental illness, [it] is taboo," said one study participant.

Another observed, "I think that there's whispers about it…. But I don't think it's well-known and I don't think it's known as how truly dangerous it is. …the Black community doesn't fully understand I think the implication. Not like cancer."

A third said, "People come into our community and are clueless about who we are and what we're all about. And have not made any effort in learning about our community, but only relying on what the media has put in front of them as this is what the African American community should look like. And, if that's your only source about the African American community, you are extremely ignorant. Well, you need to know that you…to overcome years and years of a group of people being taken advantage of in all different ways. For instance, are you familiar with the wealth gap?…education gap?…the health gap?…social justice issues. …And if you have a problem with those things, you're not gonna do well within an African American environment, because it's gonna show."

To promote a healthy brain, 72 percent of female study participants versus 59 percent of male participants reported engaging in mental activity -- for example 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 that they can engage in more activities for healthy brain support.

"They are eager to learn, but for messages on brain health to be well received and to have the biggest impact possible, we need to increase representation of minoritized groups in research and Black American community members have to be part of the decision-making process and the development of outreach programs."

Based on study participants' perceptions, the research team proposed strategies to promote brain health and to increase Alzheimer's disease awareness among Black Americans:

• Invest in the Black community's well-being throughout 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 one of the first to provide insight into the views on brain health of lower socioeconomic status Black Americans living in a Midwest metropolitan area, a population often neglected or absent from clinical trials for Alzheimer's and other diseases. Dr. Eliacin notes that while there are many insights that can be drawn from this work that could be applicable to others, there is 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, M.D., of the Indiana University School of Medicine. "The self-reported differences in Black women and men participating in healthy lifestyles also highlight other sociodemographic factors, such as gender, that should be considered as well as we develop and test approaches."