Here’s what we’re doing to connect with communities that are under-represented in Alzheimer’s disease (AD) research – and what you can do to help in those efforts as well, so that better health and more hope is available to all...
First, the facts about racial inequities in Alzheimer's:
Most people don’t realize the degree of racial inequities that exist in healthcare, research and health outcomes. Here’s a look at just a few of the statistics regarding people of color and Alzheimer’s disease in particular:
African Americans are twice as likely to develop AD than their Caucasian counterparts, and yet they are under-represented in research. Not only that, but of the 5.7 million Americans living with AD, 20% are African Americans and they shoulder a disproportionate share of the national costs of the disease, at 33%. Annually, the cost of AD and other dementias to African American families was $71.6 billion. The financial costs are staggering. But the personal costs are, of course, unquantifiable.
Latinos are 1.5 times more likely to develop AD than Caucasians, and the number affected is growing. By 2060, it is projected that 3.5 million Latinos will be living with Alzheimer’s disease – that’s about 60% of the total number of all people living with the disease today. Right now there are 1.8 million Latino families caring for loved ones with AD and other dementias, and there is a critical need for resources and training, from the national level to the community level.
The COVID-19 pandemic has only served to deepen these disparities by worsening the social determinants of health that play a role in creating the disparities in the first place – things like living in poorer neighborhoods with fewer resources, physical environment, economic instability, loss or lack of health insurance, food and housing instability and the resulting stress and mental health challenges that can come from all of these challenges.
What we’re doing to work toward eliminating racial inequities in Alzheimer's research in Rhode Island and beyond:
We at the Memory and Aging Program have maintained a focus on improving diversity in research for some time already, and those efforts are continuously building. Here are some of the major initiatives underway:
We participate in clinical studies that have specific requirements for diverse participation, in accordance with guidance from the FDA. Our efforts are supported by the larger Butler Hospital and Care New England organization, through its top-down focus on issues of racial disparities and healthcare.
We provide culturally relevant and tailored community engagement and education focused on brain health, AD literacy and earlier detection among individuals, families, and communities to help improve overall health. One way we do this is by offering AD and brain health education presentations in both English and Spanish.
We implemented our inaugural Community Advisory Board (CAB), another critical initiative. Our CAB members are volunteers from varied backgrounds who help to guide our program on best practices for engaging the full community in our program, and who provide important insights on community needs with regard to education and good brain health practices.
We are increasing the diversity and multicultural knowledge of our staff, and actively seeking out opportunities to do the same among our colleagues and out in the community. We were recently awarded two grants focused on diversity in research, one of which will allow us to hire a Diversity Coordinator in our Outreach department.
MAP Outreach Manager Tara Tang co-chairs the Diversity Across the State committee, a subgroup of the Long Term Care Coordinating Council of the Rhode Island Lieutenant Governor’s Office. She also collaborates with a variety of diverse community organizations that aid Rhode Island’s seniors, with a particular focus on how to meet needs for transportation and technology so that seniors can better access the health information and resources they need.
Dr. Athene Lee, clinical neuropsychologist at the Memory and Aging Program and director of our Alzheimer’s Prevention Registry, contributes both expertise and oversight regarding diversity in Alzheimer’s research. She serves as Co-Vice Chair of the Inclusion, Diversity and Education in Alzheimer’s disease – Clinical Trials (IDEA-CT) Committee of the national Alzheimer’s Clinical Trials Consortium. In January, 2021 Dr. Lee, who is also an assistant professor of Psychiatry and Human Behavior at Brown University, was the recipient of the department’s Diversity Early Career Faculty Development Award for her project entitled, “Cross-cultural validation of existing measures on subjective cognitive decline and aging expectation.”
What you can do to decrease racial inequities in Alzheimer's and Alzheimer's research:
Learn about how AD research can help your community and share that information with family, friends and the organizations and networks that you’re involved with. Consider working with us to host an educational presentation for your organization, church, club, or other group about AD and maintaining brain health.
Share your thoughts on clinical research with us (whether you’ve participated in research or not). Letting us know your thoughts is quick and easy — simply take our survey online at bit.ly/MAPsurvey-eng (English) or bit.ly/MAPsurvey-esp (Spanish).
Partake in conversations with our staff and clinicians about what researchers can do better. Please send us your thoughts at firstname.lastname@example.org, or call us at (401) 455-6402.
Talk to your town, city and state leaders about policies like paid leave for caregivers, and be vocal about your support for AD trainings, initiatives and research.
Together, we can help to make tomorrow healthier for us all!
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