Decisions, Decisions

Abstract

African American families' experiences with mild cognitive impairment (MCI) have received little attention in the research literature. Guided by the life-course perspective, we analyzed qualitative interview data from members of 27 African American families including the person with MCI (PwMCI), a relative or friend who was highly involved in the PwMCI's daily life, and if available, a relative or friend who had at least monthly contact with the PwMCI. Findings uncovered variability in families' MCI awareness, assessment, and need for role changes; the importance of reaching out to trusted others; and honoring PwMCI's care preferences (e.g., who should provide care). Families held varying beliefs about engaging outside support; some families insisted on keeping all care within the family while others were open to the use of external services. We showcase how diagnosis acceptance and family decision-making are at the heart of how African American families respond to MCI.

Keywords: African American caregivers; life course; mild cognitive impairment; qualitative research; social support.