Sammendrag på engelsk (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.
Aging & Mental Health, 2018