Quality of dying of nursing home residents with dementia as judged by relatives

Background: Providing good quality care for the growing number of patients with dementia is a major challenge. There is little international comparative research on how people with dementia die in nursing homes. We compared the relative's judgment on quality of care at the end of life and quality of dying of nursing home residents with dementia in Belgium and the Netherlands. Methods: This was a Belgian cross-sectional retrospective study (2010) combined with a prospective and retrospective study from the Netherlands (January 2007-July 2011). Relatives of deceased residents of 69 Belgian and 34 Dutch nursing homes were asked to complete questionnaires. We included 190 and 337 deceased nursing home residents with dementia in Belgium and the Netherlands, respectively. Results: Of all identified deceased nursing home residents with dementia, respectively 53.2% and 74.8% of their relatives in Belgium and the Netherlands responded. Comfort while dying (CAD-EOLD, range 14-42) was rated better for Dutch nursing home residents than for Belgian nursing homes residents (26.1 vs. 31.1, OR 4.5, CI 1.8-11.2). We found no differences between countries regarding Satisfaction With Care (SWC-EOLD, range 10-40, means 32.5 (the Netherlands) and 32.0 (Belgium)) or symptom frequency in the last month of life (SM-EOLD, range 0-45, means 26.4 (the Netherlands) and 27.2 (Belgium)). Conclusion: Although nursing home structures differ between Belgium and the Netherlands, the quality of care in the last month of life for residents with dementia is similar according to their relatives. However, Dutch residents experience less discomfort while dying. The results suggest room for improved symptom management in both countries and particularly in the dying phase in Belgium