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    Psychological processes in adapting to dementia: illness representations among the IDEAL cohort

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    Publication date
    2022-06
    Author
    Clare, L.
    Gamble, L.D.
    Martyr, A.
    Quinn, Catherine
    Litherland, R.
    Morris, R.G.
    Jones, I.R.
    Matthews, F.E.
    Keyword
    Alzheimer's disease
    Coping
    Dementia
    Quality of life
    Well-being
    Rights
    (c) 2022 The Authors. This is an Open Access article distributed under the Creative Commons CC-BY license (http://creativecommons.org/licenses/by/3.0/)
    Peer-Reviewed
    Yes
    Open Access status
    Gold
    
    Metadata
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    Abstract
    How people understand and adapt to living with dementia may influence well-being. Leventhal’s Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. “Disease” representations were associated with better cognition and younger age, while “aging” and “no problem” representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged.
    URI
    http://hdl.handle.net/10454/18711
    Version
    Published version
    Citation
    Clare L, Gamble LD, Martyr A et al (2022) Psychological processes in adapting to dementia: illness representations among the IDEAL cohort. Psychology and Aging. 37(4): 524-541.
    Link to publisher’s version
    https://doi.org/10.1037/pag0000650
    Type
    Article
    Collections
    Health Studies Publications

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