Culture of Dementia Care and Service Needs Among African American Caregivers of People with Dementia in Kentucky: A Mixed Method Pilot Study

Background/Purpose: Caring for older adults with dementia (including conflict and role strain due to their concomitant difficulties with memory, behavior, and communication) creates various stressors for family caregivers and can lead to deterioration in caregivers' physical health as well as their social, emotional, and psychological well-being. Despite years of focused attention, racial and ethnic minorities - especially African American older adults have roughly two times the odds of dementia compared to White older adults that reinforce the higher care burden on African American dementia caregivers. The purpose of the current study was to investigate the care strains and service needs of African American dementia caregivers in Kentucky.

Methods: Through collaborative partnerships among the research team, Alzheimer’s’ Association, Area Agency on Aging, and local churches, we conducted 3 semi-structured focus groups (2 hours) to understand care stress, self-care strategies, and service needs and survey to obtain sociodemographic, care provision, and care strains from Nov 2018 to May 2019 (N=30). Three researchers analyzed transcripts using thematic analysis (open coping, axial coding, selective coding, and final themes) and discussed any discrepancies to finalize the themes.

Results: Most caregivers were female (90%), adult -children (80%) and older than 51 years (92.1%), and had provided care for more than 3 years. Approximately four-fifths of caregivers provided help with at least three types of Instrumental activities of daily living (IADL, i.e. preparing meals, managing money, shopping, using a telephone) and half of them provided help with at least two types of activities of daily living (ADL, i.e. feeding, dressing, toileting, bathing). Thematic analyses revealed three major themes related to dementia care stress and needs. First, caregivers appreciated individual care experience including growth in faith, sense of self -efficacy, and feeling of gratefulness. Second, caregivers also showed substantial challenges related to institutional, structural, and cultural factors including lack of resources and information about symptoms, lack of access to care, mistrust based on their previous experiences with existing health care systems, lack of balance in life, and family conflicts over care. Third, caregivers expressed a strong need for support group services where they share their care experience and information related to resources as well as coping strategies

Conclusions and Implications: Given the dramatic demographic change and lack of formal service utilization and information for African American family caregivers in Louisville, KY, this study is significant in that this is the comprehensive effort to understand the unique characteristics of African American family caregivers of people with dementia to specific need-based and sensitive intervention strategies to develop culturally responsive service or educational programs to meet their needs.