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Psychological processes in adapting to dementia: illness representations among the IDEAL cohort
Clare, L. Gamble, L.D. Martyr, A. Litherland, R. Morris, R.G. Jones, I.R. Matthews, F.E.
Clare, L.
Gamble, L.D.
Martyr, A.
Litherland, R.
Morris, R.G.
Jones, I.R.
Matthews, F.E.
Publication Date
2022-06
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(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/)
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openAccess
Accepted for publication
2021-09-15
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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.
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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.
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