Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands

Abstract

Objectives: To examine cross-national care and outcomes related to end-of-life experiences.

Design: Postdeath interviews and self-administered questionnaires completed with family caregivers of residents with dementia who died in long-term care settings or shortly after transfer.

Setting: One hundred eighty-three nursing home and residential care/assisted living settings in the United States and the Netherlands.

Participants: Family caregivers of 196 residents with dementia who had died (126 in the United States and 70 in the Netherlands).

Measurements: Nine standardized measures of care and outcomes and single-item measures of overall quality of care and life.

Results: In adjusted and unadjusted analyses, U.S. family caregivers reported better care and outcomes on most of the standardized measures and better quality of care (single item) in the last 3 days of life; caregivers in the Netherlands reported better quality of life (single item) in the last month and 3 days of life. Exploratory analyses related to hospice use found differences in bivariate but not adjusted comparisons.

Conclusion: Because previous research favored care in the Netherlands to that in the United States, findings suggest improvement in end-of-life care and outcomes in the United States and stability in the Netherlands. Greater hospice use does not explain improvements in the United States directly and may relate, at least in part, to care provided by long-term care staff themselves. Better understanding of the nature and process of these improvements may suggest areas for additional improvement.