TY - JOUR
T1 - A comparison of self and proxy quality of life ratings for people with dementia and their carers
T2 - a European prospective cohort study
AU - O’Shea, E.
AU - Hopper, L.
AU - Marques, M.
AU - Gonçalves-Pereira, M.
AU - Woods, B.
AU - Jelley, H.
AU - Verhey, F.
AU - Kerpershoek, L.
AU - Wolfs, C.
AU - de Vugt, M.
AU - Stephan, A.
AU - Bieber, A.
AU - Meyer, G.
AU - Wimo, A.
AU - Michelet, M.
AU - Selbaek, G.
AU - Portolani, E.
AU - Zanetti, O.
AU - Irving, K.
PY - 2020/1
Y1 - 2020/1
N2 - 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.
AB - 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.
KW - carers
KW - Dementia
KW - intervention development
KW - proxy-rating
KW - quality of life
UR - http://www.scopus.com/inward/record.url?scp=85056091000&partnerID=8YFLogxK
U2 - 10.1080/13607863.2018.1517727
DO - 10.1080/13607863.2018.1517727
M3 - Article
C2 - 30381955
AN - SCOPUS:85056091000
SN - 1360-7863
VL - 24
SP - 162
EP - 170
JO - Aging and Mental Health
JF - Aging and Mental Health
IS - 1
ER -