A comparison of self and proxy quality of life ratings for people with dementia and their carers

a European prospective cohort study

E. O’Shea, L. Hopper, M. Marques, M. Gonçalves-Pereira, B. Woods, H. Jelley, F. Verhey, L. Kerpershoek, C. Wolfs, M. de Vugt, A. Stephan, A. Bieber, G. Meyer, A. Wimo, M. Michelet, G. Selbaek, E. Portolani, O. Zanetti, K. Irving

Research output: Contribution to journalArticle

2 Citations (Scopus)

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.

Original languageEnglish
JournalAging and Mental Health
Early online date1 Nov 2018
DOIs
Publication statusE-pub ahead of print - 1 Nov 2018

Fingerprint

Proxy
Caregivers
Dementia
Cohort Studies
Quality of Life
Prospective Studies
Aptitude
Social Support
Independent Living
Education
Anxiety
Demography

Keywords

  • carers
  • Dementia
  • intervention development
  • proxy-rating
  • quality of life

Cite this

O’Shea, E. ; Hopper, L. ; Marques, M. ; Gonçalves-Pereira, M. ; Woods, B. ; Jelley, H. ; Verhey, F. ; Kerpershoek, L. ; Wolfs, C. ; de Vugt, M. ; Stephan, A. ; Bieber, A. ; Meyer, G. ; Wimo, A. ; Michelet, M. ; Selbaek, G. ; Portolani, E. ; Zanetti, O. ; Irving, K. / A comparison of self and proxy quality of life ratings for people with dementia and their carers : a European prospective cohort study. In: Aging and Mental Health. 2018.
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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.",
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O’Shea, E, Hopper, L, Marques, M, Gonçalves-Pereira, M, Woods, B, Jelley, H, Verhey, F, Kerpershoek, L, Wolfs, C, de Vugt, M, Stephan, A, Bieber, A, Meyer, G, Wimo, A, Michelet, M, Selbaek, G, Portolani, E, Zanetti, O & Irving, K 2018, 'A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study', Aging and Mental Health. https://doi.org/10.1080/13607863.2018.1517727

A comparison of self and proxy quality of life ratings for people with dementia and their carers : a European prospective cohort study. / O’Shea, E.; Hopper, L.; Marques, M.; Gonçalves-Pereira, M.; Woods, B.; Jelley, H.; Verhey, F.; Kerpershoek, L.; Wolfs, C.; de Vugt, M.; Stephan, A.; Bieber, A.; Meyer, G.; Wimo, A.; Michelet, M.; Selbaek, G.; Portolani, E.; Zanetti, O.; Irving, K.

In: Aging and Mental Health, 01.11.2018.

Research output: Contribution to journalArticle

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 - 2018/11/1

Y1 - 2018/11/1

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

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U2 - 10.1080/13607863.2018.1517727

DO - 10.1080/13607863.2018.1517727

M3 - Article

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JF - Aging & Mental Health

SN - 1360-7863

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