Process of Addressing Advance Care Planning With African American Family Caregivers of Nursing Home Residents Diagnosed With Alzheimer's Disease and Related Dementias.

PURPOSE: To explore advance care planning (ACP) and end-of-life (EOL) communication and decision-making experiences of African American family caregivers of nursing home residents with Alzheimer's disease and related dementias (ADRD).

METHOD: The study used a descriptive qualitative design with semi-structured interviews. African American family caregivers of nursing home residents diagnosed with ADRD with documented POLST were interviewed. Sixteen participants were recruited from eight nursing homes in a large Midwestern city.

RESULTS

Three major themes were developed and highlighted that ACP and EOL conversations occurred at different points within the health care system and were facilitated by family caregivers' knowledge of residents' wishes for EOL care and the faith/spirituality of the family caregiver/resident. Conversations were challenged by caregivers' lack of understanding of medical terminology and lack of providers available to educate them.

CONCLUSION

ACP and EOL decision-making with African American family caregivers of nursing home residents with ADRD is a process that is affected by nursing home challenges, such as physician shortage. In making ACP and EOL decisions, African American family caregivers relied on their faith as well as their knowledge of wishes the resident with ADRD had verbalized or documented.