End-of-Life Decision Making for African American Older Adults with Dementia

Background: African American older adults with dementia are at an increased risk of facing the end of life without advance care plans in place and, thus, are vulnerable to receiving unwanted interventions. This often leaves family caregivers struggling to make surrogate end-of-life decisions.
Purpose: The objectives of this study were to learn more about African American surrogate end-of-life decision making for older adults with dementia. The specific aims were to: 1) capture end-of-life decision making for African American older adults with dementia by their family caregivers, including understanding and use of terminology; and 2) determine if the presence of formal or informal end-of-life care plans for older adults with dementia would be associated with higher or lower health-related quality of life in older adults with dementia and with greater family caregiver self-efficacy for surrogate decision making.
Design/Methods: This descriptive, correlational, pilot study used a mixed methods approach for cross-sectional data collection from African American dementia family caregivers (N=65). A subset of family caregivers (n=18) completed qualitative interviews. These data were analyzed using simple content and thematic analyses guided by Miles and Huberman’s methods of qualitative analyses. Family caregivers rated their health-related quality of life using the Short Form Health Survey-36 version 2 as well as that of their care recipient using the Alzheimer’s Disease Related Quality of Life instrument. Family caregiver self-efficacy for surrogate decision making was also measured using the Surrogate Decision Making Self-Efficacy Scale.
Results: Both family caregivers and care recipients were mostly female. Family caregivers were often daughters caring for a parent with dementia. Care recipients were mostly community dwelling with a diagnosis of Alzheimer’s disease. Most family caregivers (63%) reported the existence of a formal end-of-life care plan for their care recipient. Family caregivers’ interpretation of end-of-life terminology varied based on available resources and personal experiences. End-of-life decision making is most often a family decision and involves resources such as healthcare providers, and faith/spirituality, and was based on past experiences. Family caregivers rated their care recipients’ health-related quality of life as well as their own self-efficacy for surrogate decision making as high, however, neither measure was associated with the existence of a formal end-of-life care plan. Evidence supports that a relationship exists between the existence of formal end-of-life care plans and care recipient’s age (p=0.012) and number of comorbidities (p=0.021).
Implications: Study findings support the Institute of Medicine 2014 report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life that the foundation for effective communication is that the meaning patients and families attach to healthcare terminology should be aligned with healthcare providers’ understanding of the terminology. Results of this study provide a basis for future intervention studies to help empower African Americans caring for older adults with dementia to make more informed, timelier end-of-life decisions.