Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families

After-death reporting by proxies on end-of-life outcomes is used in research and can also be used to target institutions directly to improve practice. We compared the scores of family caregivers and nurses on two End-of-Life in Dementia Scales (EOLD) scales: Symptom Management (SM; range 0-45) over the last 3 months of life and Comfort Assessment in Dying (CAD; range 14-42). Higher scores represent better outcomes. Four Dutch nursing homes retrospectively enrolled 48 decedents with dementia. Total mean scores for family caregivers and nurses were 28.7 (SD 9.6) versus 25.2 (SD 12.7) for the SM and 31.7 (SD 5.5) versus 32.8 (SD 8.2) for the CAD. Mean item scores also did not differ much. Concordance Correlation Coefficients were 0.42 (SM) and 0.04 (CAD). Mean evaluations of end of life with dementia corresponded reasonably well between family and professional caregivers, but correspondence of individual observations was poor to moderate, suggesting serious differences in individual ratings but little systematic difference