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African Americans are approximately twice as likely to develop Alzheimer's or other dementias compared to non-Latino Whites and most of the care provided to older African American adults living with dementia is from family members. African American family caregivers (CGs) report time-intensive caregiving situations due to the use of less formal care services and less support from friends and family in dementia care provision. While racial and ethnic differences in caregiving have been noted in the literature, researchers have not always highlighted racial differences, which leads to fewer culturally aware interventions or suggestions for the next steps. Understanding sources of coping and stress within and outside of the individual caregiver are key to developing culturally tailored intervention strategies for health disparity populations. Guided by the sociocultural stress and coping model, the study aims to explore a) coping strategies used to adjust to caregiving demands and b) barriers to managing caregiving demands.
Methods
The current study utilizes a convergent mixed-method design with three focus groups and survey data collected in 2019. Using convenience sampling, participants were recruited from the local Alzheimer's Association chapter, the local Area Agency on Aging, and two predominately African American (AA) churches. A total of 28 AA dementia CGs participated in the study. The focus groups lasted for about an hour and were audiotaped and transcribed verbatim by the research team. After each focus group, respondents were asked to complete a 10-minute survey guided by prior research on the caregiver's sociocultural stress and coping model. Four researchers analyzed transcripts using a conceptual content analysis approach and discussed similarities and any discrepancies to finalize the themes. Criteria for rigor were employed to ensure credibility and confidence in the qualitative findings through peer debriefing, consensus-building around themes, and separate data coding by the research team members, who met regularly to discuss and identify themes.
Results
Most caregivers were female (89%), over 60 years old (61%), and had an educational level of some college or more (82%). About two-thirds of caregivers had provided care for at least three years, and a quarter of caregivers provided care at least every week. Coping mechanisms identified by participants were both individual (private emotion or religious faith) and familial (help from others with instrumental care tasks). Three levels of barriers to caregiving were identified: individual (time constraints), family (lack of support), and community (lack of affordable options for formal care).
Conclusion/Implication
Our exploratory study highlights the importance of intervention tactics for African American dementia caregivers that go beyond individual coping and include family support and community-based outreach. The COVID-19 pandemic has likely aggravated the existing lack of support for caregivers, amplifying their stress and possibly shifting their coping processes. Therefore, community-based outreach and assistance through agencies such as local governments and nonprofits should focus on making technology available via religious communities or other trusted institutions that can make it easier for African American dementia caregivers to locate resources and support.