Agreement Between Proxy-Rated and Self-Reported Quality of Life for Persons With Dementia

While quality of life (QOL) is an important endpoint of homecare for persons with dementia (PWD), PWDs often have difficulty in articulating their QOL by themselves. Instead proxy-rating is often used. However, evidence is still scarce regarding to what extent proxy-ratings reflect actual QOL of PWDs. We examined the association between self-report QOL by PWDs and proxy-rated QOL. We conducted a questionnaire survey to PWDs who were 75 years and older, their family, and homecare nurse in charge of the PWD. Two measures were used: 1) a newly developed, 4-item self-report for QOL of PWDs, and 2) a standardized, 6-item proxy-rating dementia QOL scale. In the self-report, the PWD were asked about their daily mood or satisfaction in life in brief, easy-to-understand sentences. The self-reports and proxy-ratings were compared using intraclass correlation coefficients (ICC). Data from 382 PWDs, 248 family caregivers and 124 nurses were used. The mean age of PWD was 85.9 years and 60.5% were female. The proxy-rating by nurses were more strongly associated with self-reports, compared to the association between family proxy rating and self-reports (r = 0.351, p < .001; r = 0.236, p < .001, respectively). Proxy ratings by spouses and biological children were significantly associated with self-report (r = 0.257, p =.004; r =. 204, p = .006, respectively), while rating by children-in-law were not (r = 0.217, p = .160). Proxy-ratings may not be an appropriate substitute for self-report. Homecare nurses may evaluate the QOL of PWD better than their family caregiver.