Are We Talking About the Same Thing? Black/African Americans’ Response to the BRFSS Cognitive Decline and Caregiver Modules

The Behavioral Risk Factor Surveillance System (BRFSS) is a randomized national U.S. telephone survey administered by state health departments. This study aimed to identify how Black/African Americans understand BRFSS caregiver and cognitive decline surveys and terminology to inform health messaging that centers the Black/African American experience. In focus groups, BRFSS surveys were administered to Black/African Americans (n = 30) aged ≥ 45 in Oregon. Participants were asked how they interpreted BRFSS terms ‘memory loss’ and ‘confusion,’ how these terms related to Alzheimer’s and dementia, and about caregiving and cognitive decline experiences. The culturally responsive Africana Worldview guided interpretation, which centers the Black/African American experience and individuals within interdependent relationships and community identity when explaining behaviors of people from the African diaspora. BRFSS survey responses differed from focus group responses to the same questions. Two participants reported providing care in the past two years on the survey; in discussions, 21 participants reported providing care in the past two years. Interpretations of BRFSS terminology varied greatly. Differences between age-related cognitive changes, dementia and Alzheimer’s disease were unclear. Cognitive decline was largely understood in terms of identity loss and relationship changes with the affected individual, and how that individual’s relationship changed within community. Caution is advised when using BRFSS data to frame messaging because key cognitive health terms are not universally understood. Messaging that apply the Africana Worldview centralizes relationships and community rather than impact on individual’s day-to-day activities, may be more effective for Black/African Americans and for other groups with different cultural and life experiences.