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dc.contributor.authorRobertson, S.
dc.contributor.authorCooper, C.
dc.contributor.authorHoe, J.
dc.contributor.authorLord, Kathryn
dc.contributor.authorRapaport, P.
dc.contributor.authorMarston, L.
dc.contributor.authorCousins, S.
dc.contributor.authorLyketsos, C.G.
dc.contributor.authorLivingston, G.
dc.date.accessioned2020-10-21T13:02:09Z
dc.date.accessioned2020-11-05T10:02:28Z
dc.date.available2020-10-21T13:02:09Z
dc.date.available2020-11-05T10:02:28Z
dc.date.issued2020-01
dc.identifier.citationRobertson S, Cooper C, Hoe J et al (2020) Comparing proxy rated quality of life of people living with dementia in care homes. Psychological Medicine. 50(1): 86-95.en_US
dc.identifier.urihttp://hdl.handle.net/10454/18153
dc.descriptionYesen_US
dc.description.abstractBackground. 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 differentlyen_US
dc.description.sponsorshipThis 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).en_US
dc.language.isoenen_US
dc.relation.isreferencedbyhttps://doi.org/10.1017/S0033291718003987en_US
dc.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.en_US
dc.subjectCare homeen_US
dc.subjectCareren_US
dc.subjectDementiaen_US
dc.subjectFamily careren_US
dc.subjectInstitutionen_US
dc.subjectPaid careren_US
dc.subjectProxyen_US
dc.subjectQuality of lifeen_US
dc.titleComparing proxy rated quality of life of people living with dementia in care homesen_US
dc.status.refereedYesen_US
dc.date.Accepted2018-12-06
dc.date.application2019-01-29
dc.typeArticleen_US
dc.type.versionPublished versionen_US
dc.date.updated2020-10-21T12:02:12Z
refterms.dateFOA2020-11-05T10:03:19Z


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