Portraits of Caregivers of End-Stage Dementia Patients Receiving Hospice Care

The purpose of this study was to investigate how caregivers respond to the end stages of dementia with the assistance from hospice. Data were collected from 27 family caregivers over the course of 10 months, with each caregiver being interviewed up to 4 times during the time that the patient received hospice care. Chart review data were also collected. Four distinct caregiver portraits emerged: (a) disengaged, (b) questioning, (c) all-consumed, and (d) reconciled. Caregivers in each portrait differed in how they responded to the impending death of the care recipient, the disease progression, and hospice care. Recognizing the differences in the ways that caregivers respond to the final stages of the disease will assist hospice and other providers in best meeting the needs of the caregivers.