E O'Shea1, L Hopper1, M Marques2, M Gonçalves-Pereira2, B Woods3, H Jelley3, F Verhey4, L Kerpershoek4, C Wolfs4, M de Vugt4, A Stephan5, A Bieber5, G Meyer5, A Wimo6, M Michelet7, G Selbaek7, E Portolani8, O Zanetti8, K Irving1. 1. School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland. 2. CEDOC, Chronic Diseases Research Centre, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisboa, Portugal. 3. Dementia Services Development Centre, Bangor University, Bangor, UK. 4. School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands. 5. Martin Luther University Halle-Wittenberg, Halle (Saale), Germany. 6. Department of Neurobiology, Care sciences and Society, Karolinska Institut, Stockholm, Sweden. 7. Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway. 8. Alzheimer's Research Unit-Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
Abstract
Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development.Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up. Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor. Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.
Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development.Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up. Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor. Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.
Entities:
Keywords:
Dementia; carers; intervention development; proxy-rating; quality of life
Authors: Linda Clare; Laura D Gamble; Anthony Martyr; Serena Sabatini; Sharon M Nelis; Catherine Quinn; Claire Pentecost; Christina Victor; Roy W Jones; Ian R Jones; Martin Knapp; Rachael Litherland; Robin G Morris; Jennifer M Rusted; Jeanette M Thom; Rachel Collins; Catherine Henderson; Fiona E Matthews Journal: J Gerontol B Psychol Sci Soc Sci Date: 2022-06-01 Impact factor: 4.942
Authors: Alys W Griffiths; Sarah J Smith; Adam Martin; David Meads; Rachael Kelley; Claire A Surr Journal: Qual Life Res Date: 2019-10-23 Impact factor: 4.147
Authors: Meg Perry-Duxbury; Job van Exel; Werner Brouwer; Anders Sköldunger; Manuel Gonçalves-Pereira; Kate Irving; Gabriele Meyer; Geir Selbæk; Bob Woods; Orazio Zanetti; Frans Verhey; Anders Wimo; Ron L H Handels Journal: Qual Life Res Date: 2019-10-08 Impact factor: 4.147
Authors: Gad A Marshall; Sietske A M Sikkes; Rebecca E Amariglio; Jennifer R Gatchel; Dorene M Rentz; Keith A Johnson; Oliver Langford; Chung-Kai Sun; Michael C Donohue; Rema Raman; Paul S Aisen; Reisa A Sperling; Douglas R Galasko Journal: Alzheimers Dement (Amst) Date: 2020-10-30