African American Family Caregivers Share How they Prepared for the Death of an Older Adult with Dementia: A Pilot Study of Hospice Care in A Nursing Home

Abstract The focus of this pilot study was to ascertain how bereaved African American caregivers prepared for the death of an older family member who died from a dementia-related diagnosis and the role of hospice care; an area with little research to date. Because African American older adults in the United States are at greater risk than Caucasian older adults for dementia-related health problems though less likely to be diagnosed, treated, or to enroll in hospice services, this exploratory study asked questions of the family caregivers’ experiences in preparing for the death. Purposive criterion sampling was used to identify six African American bereaved caregivers whose family member lived in a nursing home (five who were enrolled in hospice services) who were extensively interviewed, with the use of conventional content analysis of the transcripts to identify the findings. Because of the limited sample size, themes identified were considered preliminary and may help guide ongoing and further research. Five primary themes revealed ways caregivers prepared: accepting reality; “I just kind of knew;” person with dementia “was ready;” “spending time;” and, getting your “business in order.” All caregivers believed it was important to be prepared for the death, with the five who received hospice services reporting that they were prepared. Further research is needed to explore these preliminary findings of African American caregivers of family members with dementia at end-of-life to further inform social work and hospice team care.