Yes / 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. / The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The IDEAL study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. m. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001.
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/19734 |
| Date | 12 December 2023 |
| Creators | Alexander, C.M., Martyr, A., Gamble, L.D., Quinn, Catherine, Pentecost, C., Morris, R.G., Clare, L. |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, Published version |
| Rights | © 2023 Alexander, Martyr, Gamble, Quinn, Pentecost, Morris and Clare. This is an openaccess article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms., CC-BY |
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