DO PAID AND FAMILY CARERGIVERS RATE THE QUALITY OF LIFE OF SOMEONE WITH DEMENTIA LIVING IN A CARE HOME IN THE SAME WAY?

Abstract

In response to recent public concern about the Quality of Life (QoL) of people with dementia living in care homes, there has been increased investment into care home research investigating interventions to improve it. To evaluate if these interventions improve the lives of people with dementia, we require a way to measure QoL accurately and consistently. People living in care homes often have a severity of dementia which precludes self-report, requiring proxy rated QoL. Proxy reports appear to be systematically different to self-reported QoL but we do not know if, or how, paid and family caregiver proxy reports differ from each other. For the first time we compared professional and personal ratings on the DEMQOL proxy instrument using data from the Managing Agitation and Raising QUality of lifE (MARQUE) study. We analysed 1,056 pairs of staff and family rated DEMQOL proxy ratings from 86 English care homes. We compared ratings and investigated whether staff, family carer and resident characteristics were associated with ratings of staff and family proxy QoL using multilevel modelling. There was a significant difference between staff and family DEMQOL proxy mean scores (104 and 101 respectively), (Z = -7.15, p =0.00). The correlation between scores was low (0.35). Family proxy raters were more likely than staff to rate QoL as “Poor” (X2 = 55.91, p = 0.00). Exploratory analysis looking at different factors associated with ratings will be presented. Staff and family proxy raters think differently about the QoL of somebody living with dementia in care homes. We need to consider carefully what we are measuring when QoL is rated via a proxy in a care home and who the proxy rater is. Investigating further the factors associated with different perspectives of QoL can inform our evaluation of existing interventions and inform the development of future interventions to improve QoL for people with dementia living in care homes.