Alzheimer's Disease and Related Dementias: Caregiver Perspectives on Hospice Re-Enrollment Following a Hospice Live Discharge

Background: The number of individuals dying of Alzheimer's disease and related dementias (ADRDs) is steadily increasing and they represent the largest group of hospice enrollees. In 2020, 15.4% of hospice patients across the United States were discharged alive from hospice care, with 5.6% decertified due to being "no longer terminally ill." A live discharge from hospice care can disrupt care continuity, increase hospitalizations and emergency room visits, and reduce the quality of life for patients and families. Furthermore, this discontinuity may impede re-enrollment into hospice services and receipt of community bereavement services. Objectives: The aim of this study is to explore the perspectives of caregivers of adults with ADRDs around hospice re-enrollment following a live discharge from hospice. Design: We conducted semistructured interviews of caregivers of adults with ADRDs who experienced a live discharge from hospice (n = 24). Thematic analysis was used to analyze data. Results: Three-quarters of participants (n = 16) would consider re-enrolling their loved one in hospice. However, some believed they would have to wait for a medical crisis (n = 6) to re-enroll, while others (n = 10) questioned the appropriateness of hospice for patients with ADRDs if they cannot remain in hospice care until death. Conclusions: A live discharge for ADRD patients impacts caregivers' decisions on whether they will choose to re-enroll a patient who has been discharged alive from hospice. Further research and support of caregivers through the discharge process are necessary to ensure that patients and their caregivers remain connected to hospice agencies postdischarge.