Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study

• DOI: 10.1186/s12877-020-01629-1
• Publication Date: 2020-07-06T12:03:44Z
• Authors: Nicolas Farina; Derek King; Clare Burgon; Sharne Berwald; Elizabeth Bustard; Yvonne Feeney; Ruth Habibi; Adelina Comas-Her...; Martin Knapp; Sube Banerjee; ; Bayo Adelaja; Mauricio Avendano; Sally-Marie Bamford; Sube Banerjee; Sharne Berwald; Ann Bowling; Clare Burgon; Elizabeth Bustard; Ruth Habibi; Adelina Comas-Her...; Margaret Dangoor; Josie Dixon; Nicolas Farina; Yvonne Feeney; Sally Greengross; Emily Grundy; Bo Hu; Carol Jagger; Kate Jopling; Martin Knapp; Derek King; Andrew Kingston; Daniel Lombard; Klara Lorenz; David McDaid; A-La Park; Jitka Pikhartova; Sanna Read; Amritpal Rehill; Raphael Wittenberg
• Keywords: Proxy (statistics); EQ-5D; Cross-sectional study

Due to the progressive nature of dementia, it is important understand links between disease severity and health-related outcomes. The aim this study explore relationship quality life (QoL) people with dementia their family carers using a number disease-specific generic measures.In MODEM cohort study, three-hundred seven clinically diagnosed were recruited on quota basis provide equal numbers mild (standardised Mini-Mental State Examination (sMMSE), n = 110), moderate (sMMSE 10-19, 100), severe 0-9, 97) cognitive impairment. A series multiple regression models created associations QoL carers. was measured self- (DEMQOL, EQ-5D, CASP-19) proxy-reports (DEMQOL-Proxy, EQ-5D) person dementia. Carer by self-report (EQ-5D, SF-12).Disease severity, as sMMSE, not significantly associated or carer (p > 0.05), even after controlling for potential confounding variables self-reported instruments. Proxy measures (rated carer) differed systematically in that there small, but statistically significant proportions variance explained impairment adjusted models. We also found little way relationships except DEMQOL-Proxy scores EQ-5D SF-12 mental sub-scores.The data generated supports somewhat counterintuitive argument (and therefore dementia) lower when are used. However, absolute terms, judged multivariate models, clear contribution minimal whatever measurement used, be proxy-rated, generic.