Robertson, Sarah;
(2017)
Comparing Proxy Rated Quality of Life of People with
Dementia in Care Homes.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
BACKGROUND: Improving the quality of life (QOL), of people with dementia living in care homes is a priority. People living in care homes with more severe dementia are often unable to self-report QOL, so proxy ratings are needed. However, we do not know if, or how, paid and family caregiver proxy reports differ in care homes. Aim: To compare paid and family caregiver DEMQOL-Proxy-reports of care home residents with dementia and investigate any differences. METHODS: This study is nested in an epidemiological study of 86 care homes. I compared DEMQOL-Proxy total and global ratings of 1,056 pairs of staff and family carers and explored the associated factors using multilevel modelling. I interviewed 12 staff and 12 relatives about their proxy ratings and analysed their answers thematically. RESULTS: Proxy ratings were weakly correlated (rs = 0.35, p <0.001); paid carers’ median total scores were higher than family carers (104 vs 101; Z = -7.15, p < 0.001). Family carer global ratings were also more negative (X2 = 20.69 (N = 1,016), p < 0.001). Staff and family rated QOL as better when residents had fewer neuropsychiatric symptoms. Staff who were native English speakers rated residents QOL as better. Staff rated residents with severe dementia more highly on QOL. Resident’s QOL was rated more highly in homes with lower staff:resident ratio by staff. Family also rated QOL as higher when the resident spoke English as a first language, had lived for longer in the home and had no recent hospital admission. Resident’s spouses rated residents’ QOL higher than children. Qualitative results suggest differences arise because staff felt good care gave high quality of life but families experience loss and sadness at dementia and care home placement. CONCLUSION: Proxy reports are influenced by the rater and differ systematically between family and paid carers.
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