Supporting Family Caregivers of Nursing Home Residents with Dementia in Their Last Week of Life: A Survey Among Bereaved Family Caregivers.

Abstract

Background: Family caregivers of people with dementia in nursing homes may need support from healthcare providers, especially when death is approaching.

Objective: To increase our understanding of family caregivers' experiences in their relative's last week of life before and during the pandemic, their needs for emotional, practical, and spiritual support, and the extent to which those needs are accommodated by healthcare providers.

Design: Survey among bereaved family caregivers of people with dementia recruited from six nursing homes in the Netherlands in 2018-2019 and 2020-2022.

Results: The questionnaire was completed by 165 family caregivers (response rate: 55%). Most respondents (79%) rated the overall care they received as "excellent," "very good," or "good." More respondents reported a need for emotional (74%) and practical (64%) support than for spiritual support (37%). Emotional and practical support were more commonly "always" or "most of the time" provided (63% and 51%, respectively) than spiritual support (22%). Differences existed in the presence of practical, emotional, and spiritual support needs (p < 0.001) and the frequency in which those support types were provided when there was a need (p < 0.001). The overall care that was received was more likely to be rated as "excellent" or "very good" when a higher frequency of emotional (p < 0.001), spiritual (p < 0.002), or practical (p < 0.001) support was reported. Before and during the pandemic, family caregivers' responses were mostly similar.

Conclusion: Family caregivers had support needs that were not always met, which was especially the case for spiritual support needs. Healthcare providers should be trained to accommodate support needs and refer to appropriate support services when necessary.