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A comparison of self- and proxy-rated quality of life for people with dementia and its relationship to (un)met need in Ireland

Hopper, Louise, O'Sullivan, Oonagh, Joyce, Rachael, Jelley, Hannah, Woods, Bob, Orrell, Martin, Irving, Kate and Verhey, Frans (2016) A comparison of self- and proxy-rated quality of life for people with dementia and its relationship to (un)met need in Ireland. In: 26th Alzheimer Europe Conference “Excellence in dementia research and care”, 31 Oct- 2 Nov 2016, Copenhagen, Denmark.

Abstract
Measuring quality of life in dementia is challenging for many reasons: for example, poor recall, time perception, insight and communication. However, recent studies indicate that meaningful measurements can be made using subjective and proxy ratings on condition-specific measures. In this study, as part of the Access to Timely Formal Care (Actifcare) JPND-funded research project, the quality of life and the (un)met needs of people with moderate dementia and their informal caregivers are measured at baseline, 6- and 12-months using a variety of self- and proxy-rated instruments (QoL-AD, DEMQOL-U, PAI, EQ5D5L, ICECAP-O, CANE). This paper presents baseline data from forty-three Irish people with dementia and their carer dyads, living at home, and not availing of formal dementia care services. No significant differences in self-rated quality of life scores for any demographic variables or for severity of dementia (MMSE, CDR) were found, however, self-rated and proxy-rated scores were significantly different for all quality of life measures. There were also significant gender differences in proxy-rated PAI and EQ5D5L scores; that is, carers rated females with dementia as having a significantly lower quality of life than males, but female carers rated relationship quality significantly higher than male carers. Similarly, significant differences were found between self-, carer-, and researcher-rated (un)met needs, as measured by the CANE. These results illustrate the lack of consistency between the person with dementia’s own perception of their quality of life and that of their caregiver. These findings are interpreted in light of the complex pattern of met and unmet needs evident for people with dementia and their informal caregivers. Further research is needed to explore these differences and to examine the gender bias found in proxy ratings of quality of life and relationship quality
Metadata
Item Type:Conference or Workshop Item (Poster)
Event Type:Conference
Refereed:No
Subjects:Medical Sciences > Psychology
Medical Sciences > Health
DCU Faculties and Centres:DCU Faculties and Schools > Faculty of Science and Health > School of Nursing and Human Sciences
Copyright Information:© 2016 Authors
Use License:This item is licensed under a Creative Commons Attribution-NonCommercial-Share Alike 3.0 License. View License
Funders:Joint Programme for Neurodegeneration, Health Research Board
ID Code:21576
Deposited On:21 Dec 2016 13:58 by Louise Hopper . Last Modified 19 Jul 2018 15:09
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