Alzheimer’s diagnoses are projected to triple by the year 2060. Yet some groups will be affected more than others.
If current trends persist, 14% of African Americans and 12% of Hispanics over age 65 will be diagnosed with the disease, compared to 10% of non-Hispanic white older adults, according to the CDC.
Despite the rapidly growing number of racial and ethnic minorities who will be diagnosed with the disease, the medical community knows little about how to treat them. That is because they are vastly underrepresented in clinical trials that are key to finding better treatments, prevention, and a cure. For example, African Americans, who make up 13 percent of the U.S. population, have comprised less than 5 percent of major studies that have advanced knowledge about Alzheimer’s biomarkers and pathological changes.
A national campaign is now attempting to change this. Called All of Us, the $1 billion-plus project is being funded by Congress. The National Institutes of Health are working to create a national, large scale research hub that will store health data, including hair and urine samples, physical measurements, and survey responses from 1 million or more diverse participants. The database will be accessible to a wide range of researchers studying thousands of health-conditions, including Alzheimer’s or dementia.
“As the diversity of the population of the United States continues to increase, our assumptions about what may work for the general population become more and more challenged,” said Francisco Moreno, associate vice president for diversity and inclusion at the University of Arizona Health Sciences.
Organizers say that a more diverse applicant pool will help promote a precise-medicine based approach to research. “Precision medicine” is a developing method for disease treatment that takes into account an individual’s differences in genes, environment and lifestyle. Taking these differences into account will help doctors more accurately predict which treatment plan for a disease will work for a specific group of people.
Enrollment began in May 2018. As of July 2019, more than 175,000 people had contributed to the database. Of those participants, more than 80% are from groups that have been historically underrepresented in biomedical research.
Barriers to recruitment
Jenna McDavid, national director for the Diverse Elders Coalition, a group that advocates for the rights of minority elders, said there are three main reasons non-white adults are under-represented in studies.
One barrier is linguistic. Recruitment materials are often not made available in multiple languages for people who do not speak English, and many older adults lack access to the internet which can also interfere with their ability to search for medical trials on their own.
For example, more than 85% of Vietnamese, Laotian, Cambodian and Hmong older Americans have limited English proficiency, according to the 2009-2011 US Census, and many of these older adults also live in non-English speaking homes.
Another barrier is the lack of “trusted messengers.” Trusted messengers are members in the community that older adults trust. Frequently, minority older adults are not being approached by people they trust. McDavid said ongoing engagement within the community is necessary to encourage participation in research.
This challenge can be overcome by using places and mediums that different cultural groups already access. Studies have found that contacting participants in community settings, such as community-based organizations, social service agencies and also by word of mouth have been successful in gaining participation.
Regularly left out of the conversation is historical trauma, McDavid said. There is a “history of injustice that may make them wary of health research,” she said.
Diverse elders come from backgrounds where they or their communities have faced forced sterilization, or been subject to unethical experimentation, and other violations of their rights, McDavid said.
Anyone over the age of 18 who is living in the United States can join the All of Us research program, either directly through the JoinAllofUs.org website or through participating health care provider organizations.
More information on All of Us can be found at https://allofus.nih.gov/
Hannah Kanfer is currently a student at George Mason University. She has a passion for journalism and using her writing skills to help others.