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A Comprehensive Model of Factors Associated With Capability to “Live Well” for Family Caregivers of People Living With Mild-to-Moderate Dementia

Findings From the IDEAL Study

Clare, Linda, ScD*,†,‡; Wu, Yu-Tzu, PhD*,†; Quinn, Catherine, PhD*,†; Jones, Ian R., PhD§; Victor, Christina R., PhD; Nelis, Sharon M., PhD*,†; Martyr, Anthony, PhD*,†; Litherland, Rachael, MSc; Pickett, James A., PhD#; Hindle, John V., MBBS**,††; Jones, Roy W., MBBS‡‡; Knapp, Martin, PhD§§; Kopelman, Michael D., PhD∥∥; Morris, Robin G., PhD¶¶; Rusted, Jennifer M., PhD##; Thom, Jeanette M., PhD***; Lamont, Ruth A., PhD*,†; Henderson, Catherine, PhD§§; Rippon, Isla, PhD; Hillman, Alexandra, PhD§; Matthews, Fiona E., PhD††† on behalf of the IDEAL study team

Alzheimer Disease & Associated Disorders: December 05, 2018 - Volume Publish Ahead of Print - Issue - p
doi: 10.1097/WAD.0000000000000285
Original Article: PDF Only

Introduction: Understanding key influences on outcomes for caregivers of people with dementia is hampered by inconsistent conceptualization and measurement of outcomes and limited evidence about the relative impact of different variables. We aimed to address these issues.

Methods: We analyzed data from 1283 caregivers of community-dwelling individuals with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life cohort study. We generated a “living well” latent factor from measures of quality of life, satisfaction with life, and well-being. We used structural equation modelling to derive latent variables for 7 domains reflecting caregivers’ perceptions of their personal resources and experiences, and to examine the associations with caregivers’ perceptions of their capability to “live well.”

Results: The domain of psychological characteristics and psychological health was most strongly related to living well [2.53; 95% confidence interval (CI), 2.08-2.97], followed by physical fitness and physical health (1.48; 95% CI, 1.04-1.91) and experiencing caregiving (1.34; 95% CI, 0.99-1.70). Social capitals, assets and resources (0.68; 95% CI, 0.35-1.00) and relationship with the person with dementia (−0.22; 95% CI, −0.41 to −0.03) had smaller, significant associations. Social location (0.28; 95% CI, −0.33 to 0.89) and managing everyday life with dementia (0.06; 95% CI, −0.15 to 0.28) were not significantly associated with living well.

Discussion: These findings demonstrate the importance of supporting caregivers’ psychological and physical health and their ability to develop and maintain positive coping strategies, as well as enabling them to maintain vital social capitals, assets and resources.

This is an open access article distributed under the Creative Commons Attribution License 4.0 (CCBY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

*Centre for Research in Ageing and Cognitive Health (REACH), School of Psychology

Wellcome Centre for Cultures and Environments of Health, University of Exeter

PenCLAHRC, University of Exeter Medical School

Innovations in Dementia, Exeter

§Wales Institute for Social and Economic Research, Data, and Methods, Cardiff University, Cardiff

College of Health and Life Sciences, Brunel University London

#Alzheimer’s Society

§§Personal Social Services Research Unit, London School of Economics and Political Science

Departments of ∥∥Psychological Medicine

¶¶Psychology, King’s College London, Institute of Psychiatry, Psychology, and Neuroscience, London

**Department of Care for the Elderly, Betsi Cadwaladr University Health Board, Llandudno

††School of Psychology, Bangor University, Bangor

‡‡RICE (The Research Institute for the Care of Older People), Bath

##School of Psychology, University of Sussex, Brighton

†††Institute for Health and Society, Newcastle University, Newcastle upon Tyne, UK

***School of Medical Sciences, University of New South Wales, Sydney, Australia

The research materials supporting this publication will be made accessible through the UK Data Archive ( in 2019.

The IDEAL study was supported by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 “Improving the experience of Dementia and Enhancing Active Life: living well with dementia” (Investigators: L.C., I.R.J., C.R.V., J.V.H., R.W.J., M.K., M.D.K., R.L., A.M., F.E.M., R.G.M., S.M.N., J.A.P., C.Q., J.M.R., and J.M.T.). The funders had no role in the study design, data collection, data analysis and interpretation, writing of the report, or the decision to submit the article for publication (

L.C., C.Q., I.R.J., C.R.V., S.M.N., A.M., J.A.P., J.V.H., R.W.J., M.K., M.D.K., R.G.M., J.M.R., and J.M.T. were involved in the original conception and design of the project, and secured funding. Y.-T.W., F.E.M., and L.C. are responsible for the data analysis and interpretation. The lead author L.C. was responsible for drafting the article.

The authors declare no conflicts of interest.

Reprints: Linda Clare, ScD, REACH, University of Exeter Medical School, South Cloisters, St Luke’s Campus, Exeter EX1 2LU, UK (e-mail:

Received August 6, 2018

Accepted October 14, 2018

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