John Morris is a neurologist at Washington University in St. Louis. He researches the causes and treatments of Alzheimer’s disease, and though St. Louis has a large African American population—about 46% of the city’s 303,000 residents are black—clinical research conducted at his Alzheimer’s Disease Research Center struggles to reflect the population’s demographics.
That’s why under Morris’ direction, his center has advertised their research studies within local churches, fraternities, sororities, and schools to try to increase African American representation in Alzheimer’s trials.
Morris attended the recently concluded Alzheimer’s Association International Conference (AAIC 2019) in Los Angeles, California, where thousands of others too gathered to swap theories and research over panel discussions. Most researchers are trying to increase diversity in their research—not to simply pay lip service to social justice, but to increase the likelihood of finding a cure for Alzheimer’s.
For decades, Alzheimer’s research has focused on the theory that a protein called amyloid is the primary culprit behind the most common form of dementia. But clinical trials targeting the protein have consistently failed.
Not only that, but Alzheimer’s affects people of varying ethnicities, sexual and gender identities, and employment and educational backgrounds differently—yet the overwhelming majority of clinical research in Alzheimer’s is on white, affluent participants. Even if researchers do find a treatment for Alzheimer’s disease, it may not work for everyone. This disparity sets the field up for failure.
“It’s like being in a dark room with a single lamp and studying only the part of the room that’s illuminated.”
– Jennifer Manly, Neuropsychologist at Columbia University
By excluding minorities from research, the scientific community is not only overlooking potential therapies, but failing to address social health disparities: Minorities have higher rates of dementia.
Importance of inclusiveness
At AAIC, most researchers were aware of the diversity issue, and argued emphatically that it needed to be fixed.
The research presented at the conference reflected that urgency:
- Work showing that sleep aids or medications either raise or lower dementia risks in white or black populations, respectively, illuminates how biological differences could alter the way Alzheimer’s manifests.
- Research finding that LGBT individuals are more likely to report early signs of dementia suggests other mental and social factors may play a role in the disease’s pathology.
- And evidence that women who work outside the home may be more resilient against cognitive decline highlights the need to explore other protective factors.
By studying a range of populations, researchers can see how dementia strikes unequally—and gain insight into possibly overlooked nuances of the disease.
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