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Blacks have a significantly higher risk than Whites for developing Alzheimer’s disease. But there are efforts underway to increase their participation in clinical trials to learn more about the disease’s impact on this population.
Alzheimer’s disease is the most common type of dementia, which is a general term for the impaired ability to remember, think, and make decisions that interfere with doing everyday activities. It’s a progressive disease beginning with mild memory loss and possibly leading to loss of the ability to carry on a conversation and respond to the environment.
As many as 5.8 million Americans are living with Alzheimer’s disease, and Blacks are about twice as likely as non-Hispanic whites to develop the disease or other forms of dementia, according to the Alzheimer’s Association, a group that focuses on research, care, and education.
Among Black Americans ages 70 and older, 21.3% are living with Alzheimer’s, states the association. Blacks are also carrying a burden of 33% of the overall national cost for Alzheimer’s, which is mainly from caregiving costs, as well as loss and income and productivity, according to Stephanie Monroe, director of the African American Network Against Alzheimer’s.
“Alzheimer’s is costing Blacks generations and generations of income and wealth that’s been built since the Civil Rights era,” Monroe told Caregiver Crossing, a podcast focused on caregiving. “People can have one generation of Alzheimer’s and wipe it all out.”
Researchers are still examining why Blacks are impacted by Alzheimer’s disease at a greater rate. Studies show that it’s a combination of socioeconomic disparities, higher rates of chronic disease such as diabetes and heart disease, and genetics. And according to the U.S. Food and Drug Administration, Blacks represent less than 5% of participants in many clinical trials for new drugs and therapies.
That lack of representation in clinical trials means that medical professionals not only don’t understand the full impact of Alzheimer’s in the Black community but also don’t know if treatments that are found actually work on this population, says Monroe, whose organization primarily focuses on increasing Black participation in clinical trials. “We really have to roll up our sleeves and make clinical participation like voting,” she adds
There are a myriad of reasons why Blacks aren’t participating in Alzheimer’s-focused clinical trials. That includes a mistrust of the predominately White research establishment with its well-documented history of medical abuse, differing cultural attitudes and beliefs towards research and illness, isolation of older individuals, and a lack of education about the purpose of research, studies show.
The mistrust in particular is underscored by evidence that Blacks are less likely than Whites to be diagnosed with Alzheimer’s disease by their physicians until later stages. “It’s imperative that the Alzheimer’s community is aware of the impact of historical racism, and also the current racial discrimination in health care that presents obstacles for inclusive participation in Alzheimer’s trials,” says Dr. Carl V. Hill, Alzheimer’s Association chief diversity, equity and inclusion officer.
Last year, the National Institute on Aging, part of the U.S. National Institutes of Health, launched an online tool, OutreachPro, to help researchers and clinicians increase awareness and participation in clinical trials in Alzheimer’s disease and other dementias, especially among traditionally underrepresented communities.
The tool, launched at the 2021 Alzheimer’s Association International Conference in Denver, allows researchers, clinicians, and trial administrators to create and customize outreach materials such as websites, handouts, videos, and social media posts with an emphasis on reaching traditionally underrepresented communities.
“Outreach Pro was designed to provide well-tested and culturally appropriate outreach materials that resonate with diverse populations and encourage them to participate in clinical trials,” said Dr. Holly Massett, Ph.D., Senior Advisor on Clinical Research and Engagement at NIA, who oversees the implementation of the national strategy.
Clinical trials themselves are also doing their part. The AHEAD Study, for instance, is particularly focused on getting ahead of Alzheimer’s with treatments that work for everyone, including those who are historically underrepresented in research. It’s the first Alzheimer’s disease research study to recruit people as young as 55 years old who are at risk of developing symptoms of Alzheimer’s disease as they get older.
“It is absolutely critical that we bring some balance so we don’t see this disproportionate impact because of lack of access, or because of lack of knowledge,” said Dr. Doris Molina-Henry of the University of California Alzheimer’s Therapeutic Research Institute, who’s part of the AHEAD study.
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