We know that Black older adults are twice as likely as non-Hispanic white older adults to be diagnosed with Alzheimer’s Disease and related dementias (ADRD). Consequently, this places Black caregivers of older adults with ADRD at higher risk of morbidity and mortality due to the stress and burnout of caregiving. Researchers at Rush University sought to determine the influence that cultural factors have on resilience and experiences of Black caregivers. They found that although Black ADRD caregivers spend more time caregiving and have poorer health outcomes as a result than their white ADRD caregiver counterparts, they are also less likely to report difficulties with caregiving. Why is this so?
The researchers found that Black caregivers were less likely to access resources available to them, which, according to interviews with 10 Black ADRD caregivers, they found was the product of systemic racism, discrimination, historical mistrust in the healthcare system, and lack of access. They observed that this led to a general sense of isolation for caregivers, in turn building up resilience, defined as the process of adapting well to adversity, trauma, tragedy, threats, or significant stress (American Psychological Association, 2014), they carried into caregiving. Among caregivers interviewed, there were commonalities in perspectives, values, and cultural practices. For example, caregivers shared the understanding that ADRD progression is not linear, as well as the expectation that their roles as caregivers would change over the years as their loved one’s disease progressed. As a result, caregivers were more prepared to adapt to changes in their responsibilities, thus contributing to greater resilience as a whole.
Notably, 9 out of the 10 interviewed caregivers were women, who were reported as the “matriarchs of their families” that upheld intergenerational traditions and a distinct cultural heritage (25). Additionally, the importance of community was a common thread among interviewees. Many said that they accepted the difficulties of caregiving because they would never want to put a loved one in a nursing home. Friends, family, social groups, religion and faith, and dedication to their loved ones were common sources of support among caregivers in the study. These findings consequently offer valuable insight into how cultural factors might influence caregiving experiences and resilience.
Even though Black ADRD caregivers carry a higher burden than white ADRD caregivers, they are not equally represented in research focused on diminishing the burden of caregiving. Knowing the cultural sources of resilience in Black caregivers can not only inform methods of outreach to increase representation in research, but can allow better, more targeted allocation of resources to ensure that Black caregivers of those with ADRD have access to support for their loved ones and themselves.
UCSD Black Women: Inflammation and Tau Study (BWITS) site: https://www.b-wits.org/
Article of Interest:
Burton SD, Paun O, Ruppar T, Mohr L, Emezue CN, Szanton SL. Resilience in Black/African American Partner Caregivers of Persons With Alzheimer’s Disease and Related Dementias. Research in Gerontological Nursing. 2025;18(1):21-28. doi:10.3928/19404921-20241211-04
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