Take Charge of Your Health Today: Dismantling dementia disparities with socially-just healthcare

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According to national statistics, Black Americans are about twice as likely to develop dementia syndromes, including Alzheimer’s Disease, than White Americans. However, they’re 35% less likely to be diagnosed correctly.

When they are diagnosed, they and their care partners —often Black women—must work harder and travel farther to get treatment than their White counterparts.

The treatment, too, is inequitable. AD drugs are the result of research from studies of White participants who are highly educated, affluent, well supported, and in good health.

As with other chronic health problems that affect marginalized people, dementia’s risk factors may have more to do with health disparities than genetics. The disparities are bound up in systemic racism and social determinants of health like economic stability, healthcare access and quality, and neighborhood dynamics.

DR. LILCELIA “CECE” WILLIAMS.

Dr. Lilcelia “CeCe” Williams, an OSCAR scholar in Pitt’s Alzheimer’s Disease Research Center (ADRC) is one of the university’s future health leaders who is focusing her time and talents on enhancing our region’s dementia care and research—especially for underserved communities.

OSCAR stands for Optimizing Scientific Careers in AD Research. It’s a program designed to identify, attract, and foster professionals like Dr. Williams. Currently, five OSCAR scholars are taking part in AD leadership activities at Pitt, including a leadership apprenticeship with a mentor.

Dr. Williams brings to her apprenticeship a zeal and personal mission to end health disparities and improve health outcomes for marginalized people affected by strokes and dementia syndromes.

Her goal is to raise up minority voices and help create, promote, and sustain long-lasting AD healthcare that’s inclusive, culturally responsive, and community driven. “Socially just healthcare demands that we see, hear, and value marginalized people who have dementia, as well as their care partners, family members, and friends,” she explains. “Dementia is a terrible condition that robs people and communities of their stories.” 

Dr. Williams points to previous studies as examples for addressing underrepresentation in marginalized groups. For example, one study tracks how  racism-based stress and adversity ages the brains of Black American men.

She believes research must be based on the desires and needs of minoritized people. “To build trust in what we’re doing, we’re getting to know people in their neighborhoods,” she states. “For example, we’ve recently attended events on Black health and equity, as well as a Thanksgiving food distribution sponsored by the Urban League. We’re humbled to be in the community listening and getting to know people in churches, barbershops, and community engagement centers.”

She continues, “We want people to know we’re here for them with dementia information, cognitive assessments, and help with support services. When people feel the healthcare system values them and their experiences—that’s when we can chip away at racial research bias together.”

One of Dr. Williams’ most ardent wishes concerns AD care partners who face major challenges. “These (mostly) Black women are juggling caregiving duties and family responsibilities,” she says. “Some have had to quit their jobs to take care of a loved one. That can add an even deeper layer of financial stress and strain. Others are caregiving while holding down jobs and/or attending classes. It’s a heavy burden for one person to handle.”

Dr. Williams reminds care partners to take time for self-care without feeling guilty. “If you’re caring for a loved one with dementia, taking even a small amount of time to get some fresh air or take a shower is a brave and vital thing you can do for them and you.”

She encourages care partners to take advantage of our region’s dementia resources, including Pitt’s ADRC, the Jewish Healthcare Foundation, and caregiver support from Allegheny County’s Health and Human services. “Please look at self-care as an act of strength.”

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