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.; Matthews, Fiona E.

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 crosssectional 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. Weelicited 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 problemfocused 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 copingwith dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged

Citation

Clare, L., Gamble, L. D., Martyr, A., Quinn, C., Litherland, R., Morris, R. G., Jones, I. R., & Matthews, F. E. (2022). Psychological Processes in Adapting to Dementia: Illness Representations Among the IDEAL Cohort. Psychology and Aging, 37(4), 524-541. https://doi.org/10.1037/pag0000650

• Journal Article Type: Article
• Acceptance Date: Sep 15, 2021
• Online Publication Date: Dec 9, 2021
• Publication Date: Jun 1, 2022
• Deposit Date: Mar 30, 2024
• Publicly Available Date: Apr 3, 2024
• Journal: Psychology and Aging
• Print ISSN: 0882-7974
• Publisher: American Psychological Association
• Peer Reviewed: Peer Reviewed
• Volume: 37
• Issue: 4
• Pages: 524-541
• DOI: https://doi.org/10.1037/pag0000650
• Keywords: Alzheimer’s disease; Coping; Dementia representations; Quality of life; Well-being
• Public URL: https://hull-repository.worktribe.com/output/4451081