Continuing on in the spirit of collaboration, WAM interviewed Jason Resendez, Executive Director of the UsAgainstAlzheimer’s Center for Brain Health Equity and head of the LatinosAgainstAlzheimer’s Coalition and Stephanie Monroe, Executive Director of AfricanAmericansAgainst Alzheimer’s about the disproportionate impact this disease has on communities of color.
Read the Q&A with Jason Resendez and Stephanie Monroe below.
WAM: When you look at a map of the United States and highlight the counties with the highest numbers of Alzheimer’s cases in people of color, what trends do you each see– and what does the map tell you about how those geographic areas intersect with Alzheimer’s disease in women of color?
Jason & Stephanie: We partnered with the Urban Institute to analyze the counties with the highest prevalence of Alzheimer’s disease among Black and Latino Americans and what we found was striking. We found that the counties with the highest prevalence of Alzheimer’s among these populations were more likely to have worse social determinants of health outcomes than counties with the lowest prevalence of Alzheimer’s. For example, families in these counties were less likely to have insurance, more likely to live in poverty, and less likely to have access to exercise opportunities. What this tells us is that the infrastructure needed for better health is limited in the counties most impacted by Alzheimer’s.
WAM: Over the past year, we’ve begun a long-overdue national conversation about health disparities in communities of color. How do each of you view this subject from the perspective of the disproportionate impact Alzheimer’s has on the African American and Latinx populations you study and represent?
Jason & Stephanie: There has never been a more urgent time to address the impact of Alzheimer’s on women and communities of color. Black Americans are approximately two times more likely, and Latinos are 1.5 times more likely to develop Alzheimer’s and related dementias than non-Latino Whites. More than 60 percent of unpaid Alzheimer’s caregivers are women. Black and brown women are in the crosshairs of this health crisis, and we need to do more to develop intersectional solutions to the Alzheimer’s challenge, that means embracing not just equity but also racial, economic, and gender justice in our work as advocates, researchers, and policymakers.
WAM: We are told that people of color are less likely to be diagnosed early and less likely to engage in clinical trials. Why? What’s at play here?
Jason & Stephanie: Equity in diagnosis and research are interconnected. Despite being at higher risk for Alzheimer’s and related dementias, Black and Latina women are less likely to receive a diagnosis and less likely to be enrolled in cutting-edge research. There are major barriers to care and research in underserved and underrepresented communities, from a lack of health insurance and access to healthcare services to outright racial discrimination. In fact, half of Black Americans and one in three Latino Americans report they have experienced discrimination when seeking health care. These systemic inequities contribute to disparities in Alzheimer’s that too often impact lower-income Black and Latina women. It’s past time for the healthcare system and for policymakers to invest in these communities by bringing community health centers and community health navigators into the Alzheimer’s enterprise. By centering our Alzheimer’s infrastructure in hard-hit communities, the system will be better positioned to respond to the needs of these communities, build trust, and improve long-term health outcomes.
WAM: What are the social determinants of health you consider the most pressing for us to address so that we may enjoy greater health equity in this country, especially as it relates to Alzheimer’s and dementia?
Jason & Stephanie: Emerging science points to the ability to reduce dementia risk and slow the rate of cognitive decline as people age through early detection and behavior change across the lifespan, particularly in midlife. Studies indicate more than a third of dementia cases are potentially preventable by addressing risk factors including education, treatment of hypertension, exercise, social engagement, smoking, hearing loss, depression, diabetes, and obesity. At the same time, many of these risk factors, including educational attainment, are shaped by larger forces beyond the control of individuals. It’s urgent that the field embrace risk reduction while recognizing and acting on the role systemic inequities play in preventing all families from taking advantage of this hopeful message.
WAM: The President’s Infrastructure Bill has an ambitious goal to help caregivers and care providers by establishing paid leave and allocating $400 billion on home and community-based caregiving services over the next 8 years. Will that help the communities on whose behalf you advocate?
Jason & Stephanie: The inclusion of paid family and medical leave and home and community-based supports in the American Families Plan was a hopeful sign for the dementia community. It’s time for our elected leaders to stand up for our nation’s more than 50 million family caregivers, including the 16 million caregivers who provide 18 billion hours of unpaid care and support a year, valued at $257 billion, for loved ones living with Alzheimer’s or related dementias. This care falls disproportionately on communities of color and women – communities that have been hard hit by the pandemic. No one should have to choose between their job and their family’s well-being because we lack family-friendly policies like paid family and medical leave.
WAM: Are you feeling optimistic or pessimistic about our ability to reduce the incidence of Alzheimer’s in communities of color—and why?
Jason & Stephanie: Tremendous progress is being made against Alzheimer’s that gives us reason to be optimistic. From a scientific perspective, we are learning more and more about the pathology of the disease and that’s driving the development of new treatments. From a care perspective, we see a growing commitment from political leaders in Congress and in the White House to support caregivers with more compassionate economic policies. At the same time, we need to do much more to ensure this momentum reaches women of color. Take treatments for example. This year we saw the first new Alzheimer’s drug approval in decades, yet the treatment was developed with dismal representation from Latinos, Black Americans, and American Indians. This is a persistent issue that deserves greater attention from the field, advocates, and policymakers.
If you would like to learn more about UsAgainstAlzheimer’s Center for Brain Health Equity Resources click HERE.