Caring for a family member with Alzheimer's disease: the lived experiences of African American caregivers

Alzheimer’s disease is the most common type of dementia and is a significant health problem for the person with Alzheimer’s and for their caregiver. African Americans have at least double the prevalence of Alzheimer’s disease compared to European Americans. Additionally, African American caregivers provide up to 40 more hours of care per week than White caregivers. Despite these disparities, there is limited research on the experiences of African Americans providing care for family members with Alzheimer’s. The purpose of this qualitative study was to describe how African American family caregivers of persons with Alzheimer’s disease manage caregiving. Descriptive phenomenology was the method used to understand the lived experiences of African American family caregivers. Data collection consisted of demographic information to describe the sample and semi-structured interviews to address the research question. Based on participant preference, 15 individual semi-structured and in-depth interviews were conducted by the researcher via telephone or videoconference. Guided by Swanson’s theory of caring, the data transcribed from the audio-recorded interviews were analyzed by the researcher using Colaizzi’s methodology. Eight themes emerged from the data: (a) Parenting All Over Again, (b) Self-Sacrifice, (c) Caring for the Caregiver, (d) Connecting to God, (e) Responsibility to Care, (f) Trapped, (g) Beyond Exhaustion, and (h) Loss of Self. Based on these findings, there is a considerable need for greater support, health promotion, and development of appropriate interventions to alleviate the challenges experienced by African American caregivers of family members with Alzheimer’s disease.