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Lookup NU author(s): Dr Laura GambleORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Copyright © 2023 Alexander, Martyr, Gamble, Quinn, Pentecost, Morris, Clare and on behalf of the IDEAL study team.Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed.
Author(s): Alexander CM, Martyr A, Gamble LD, Quinn C, Pentecost C, Morris RG, Clare L
Publication type: Article
Publication status: Published
Journal: Frontiers in Aging Neuroscience
Year: 2023
Volume: 15
Online publication date: 11/12/2023
Acceptance date: 20/11/2023
Date deposited: 08/01/2024
ISSN (electronic): 1663-4365
Publisher: Frontiers Media SA
URL: https://doi.org/10.3389/fnagi.2023.1277336
DOI: 10.3389/fnagi.2023.1277336
Data Access Statement: Publicly available datasets were analyzed in this study. IDEAL data were deposited with the UK data archive in April 2020. Details of how to access the data can be found here: https://reshare.ukdataservice. ac.uk/854293/
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