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

Clare, Linda, Gamble, Laura D., Martyr, Anthony, Quinn, Catherine, Litherland, Rachael, Morris, Robin G., Jones, Ian R. ORCID: https://orcid.org/0000-0002-1682-9134 and Matthews, Fiona E 2022. Psychological processes in adapting to dementia: illness representations among the IDEAL cohort. Psychology and Aging 37 (4) , pp. 524-541. 10.1037/pag0000650

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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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education) Wales Institute of Social & Economic Research, Data & Methods (WISERD)
Additional Information:	This article has been published under the terms of the Creative CommonsAttributionLicense(http://creativecommons.org/licenses/by/3.0/)
Publisher:	American Psychological Association
ISSN:	0882-7974
Date of First Compliant Deposit:	4 October 2021
Date of Acceptance:	15 September 2021
Last Modified:	09 May 2023 22:22
URI:	https://orca.cardiff.ac.uk/id/eprint/144638

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