Dying With Dementia in Long-Term Care

Purpose: To better understand the experiences and potential unmet need of persons who die in long-term care. Design and Methods: We conducted after-death interviews with staff who had cared for 422 decedents with dementia and 159 who were cognitively intact and received terminal care in U.S. nursing homes (NHs) or residential care-assisted living (RC-AL) settings. We conducted family caregiver interviews for 293 decedents. Results: We noted no differences between decedents with and without dementia in terms of pain, psychosocial status, family involvement, advance care planning, most life-prolonging interventions, and hospice use. Dying residents with dementia tended to die less often in a hospital, have less shortness of breath, receive more physical restraints and sedative medication, and use emergency services less frequently on the last day of life. Persons with dementia dying in RC-AL settings tended to have more skin ulcers and poorer hygiene care than nondemented persons in RC-AL settings. In comparison with persons dying with dementia in NHs, those in RC-AL settings tended to be restrained less often, have emergency services called more often on the day of death, and have family more satisfied with physician communication. Implications: These results suggest that the overall quality of care for persons dying with dementia in long-term-care settings may not differ markedly from that provided to persons who are cognitively intact. Similarly, large discrepancies in the overall quality of palliative care for persons with dementia in RC-AL facilities and NHs were not identified. However, numerous specific areas for care improvement were noted.