Quality of end-of-life nursing home care in dementia: relatives' perceptions

Objectives Only a few studies have investigated the quality of end-of-life care provided to nursing home residents with dementia as perceived by their relatives. We aim to investigate the quality of end-of-life care as perceived by relatives and to investigate which characteristics of nursing home residents with dementia, their relatives and the care they received are associated with the evaluation the quality of end-of-life care as perceived by the relatives. Methods Data used were from two cross-sectional studies performed in Flanders in 2010 and 2015. Questionnaires were sent to bereaved relatives of nursing home residents with dementia and 208 questionnaires were returned. The quality of end-of-life care as perceived by the relatives was measured with the End-of-Life with Dementia-Satisfaction With Care scale (scores ranging 10-40). Results In total, 208 (response rate(2010): 51.05%, response rate(2015)=60.65%) bereaved relatives responded to the questionnaire. The quality of end-of-life care as perceived by them was positively associated with the nursing home resident being male (b=1.78, p<0.05), relatives receiving information on palliative care (b=2.92, p<0.01) and relatives receiving information about medical care from care providers (b=2.22, p<0.01). Conclusion This study suggests that relatives need to be well informed about palliative and medical care. Future end-of-life care interventions in nursing homes should focus on how to increase the information exchange and communication between nursing home staff and relatives.