Longitudinal Predictors of Informant-Rated Involvement of People with Dementia in Everyday Decision-Making: Findings from the IDEAL Program

Author:

Sabatini Serena1ORCID,Martyr Anthony2ORCID,Gamble Laura D.3,Collins Rachel2,Matthews Fiona E.3,Morris Robin G.4,Rusted Jennifer M.5ORCID,Pentecost Claire2,Quinn Catherine67,Clare Linda2,

Affiliation:

1. Faculty of Biomedical Sciences, University of Italian Switzerland, Lugano, Switzerland

2. Centre for Research in Ageing and Cognitive Health, Faculty of Health and Life Sciences, University of Exeter Medical School, Exeter, UK

3. Population Health Sciences Institute, Newcastle University, Newcastle, UK

4. Department of Psychology, King’s College London, Institute of Psychiatry, Psychology and Neuroscience, London, UK

5. School of Psychology, University of Sussex, Brighton, Brighton, UK

6. Centre for Applied Dementia Studies, Bradford University, Bradford, UK

7. Wolfson Centre for Applied Health Research, Bradford, UK

Abstract

The extent to which people with dementia are involved in everyday decision-making is unclear. We explored informant-rated involvement of people with dementia in everyday decision-making over 2 years and whether functional, behavioral, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making. We used IDEAL data for 1182 people with dementia and their caregivers. Baseline mean score on the decision-making involvement scale was 31/45; it minimally declined over time. People with dementia who were female, single, and/or whose caregiver was younger had greater involvement in everyday decision-making than those without these characteristics. Better cognition, fewer functional difficulties, fewer neuropsychiatric symptoms, less caregiver stress, and better informant-rated relationship quality were associated with higher involvement in everyday decision-making. Cognitive and functional rehabilitation, and educational resources for caregivers, could prolong involvement of people with dementia in everyday decision-making.

Funder

Economic and Social Research Council (ESRC) and the National Institute for Health Research

Alzheimer’s Society

Publisher

SAGE Publications

Subject

Geriatrics and Gerontology,Gerontology

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