Yes / . Improving quality of life (QOL) for people with dementia is a priority. In care
homes, we often rely on proxy ratings from staff and family but we do not know if, or how,
they differ in care homes.
Methods. We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care
homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative
interviews.
Results. Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were
higher than family’s (104 v. 101; p < 0.001). Family were more likely than staff to rate resident
QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had
fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with
lower staff:resident ratios and when staff were native English speakers. Family rated QOL
higher when the resident had spent longer living in the care home and was a native
English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest
differences arise because staff felt good care provided high QOL but families compared the
present to the past. Family judgements centre on loss and are complicated by decisions
about care home placement and their understandings of dementia.
Conclusion. Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently / This research was supported by the UK Economic and Social Research Council and the National Institute of Health Research Grant number NIHR/ESRC (S.R., P.R, L.M., G.L., C.C., S.C., ES/L 001780/1); the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care North Thames at Bart’s Health NHS Trust (SR, PP, GL); the UCLH NIHR Biomedical Research Centre (GL, CC); and the Johns Hopkins Alzheimer’s Disease Research Center (C.L., P50AG005146, PI: Albert).
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/18153 |
| Date | 21 October 2020 |
| Creators | Robertson, S., Cooper, C., Hoe, J., Lord, Kathryn, Rapaport, P., Marston, L., Cousins, S., Lyketsos, C.G., Livingston, G. |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, Published version |
| Rights | © Cambridge University Press 2019. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/ by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited. |
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