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    Caregivers' beliefs about dementia: findings from the IDEAL study

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    Publication date
    2019
    Author
    Quinn, Catherine
    Jones, I.R.
    Martyr, A.
    Nelis, S.M.
    Morris, R.G.
    Clare, L.
    IDEAL Study Team
    Keyword
    Caregiver
    Common Sense Model
    Dementia
    Diagnosis
    Illness representation
    Rights
    (c) 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/ licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
    Peer-Reviewed
    Yes
    
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    Abstract
    Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.
    URI
    http://hdl.handle.net/10454/17037
    Version
    Published version
    Citation
    Quinn C, Jones IR, Martyr A et al (2019) Caregivers' beliefs about dementia: findings from the IDEAL study. Psychology & Health. 34(10): 1214-1230.
    Link to publisher’s version
    https://doi.org/10.1080/08870446.2019.1597098
    Type
    Article
    Collections
    Health Studies Publications

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