The Lived Experience of African-American Informal Caregivers of Family Members with Alzheimer's Disease and Related Dementias.

The purpose of this qualitative study was to describe the lived experience of African-American informal caregivers of family members with Alzheimer's Disease and Related Dementias (ADRD) in a home environment. Using a qualitative, phenomenological approach, a purposive sample of 16 African-American informal caregivers completed an in-depth interview that lasted from 30 to 60 minutes. Four themes emerged: (a) a sense of obligation, (b) an arduous journey, (c) sentinel events, and (d) faith in God. Findings indicated that caregivers needed to be well-informed concerning the demands of caregiving and needed more assistance with the task of delivering care. Informal caregivers lacked support, knowledge, and guidance. Implications for the discipline of nursing include emphasis on family assessment, teaching, awareness of resources, and collaboration with healthcare teams.