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A Comprehensive Model of Factors Associated With Subjective Perceptions of “Living Well” With Dementia

Findings From the IDEAL Study

Clare, Linda, ScD*,†,‡; Wu, Yu-Tzu, PhD*,†; Jones, Ian R., PhD§; Victor, Christina R., PhD; Nelis, Sharon M., PhD*,†; Martyr, Anthony, PhD*,†; Quinn, Catherine, 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.0000000000000286
Original Article: PDF Only

Introduction: We aimed to better understand what predicts the capability to “live well” with dementia by identifying the relative contribution of life domains associated with the subjective experience of living well.

Methods: We analyzed data from 1547 individuals with mild-to-moderate dementia in the IDEAL cohort. We generated a “living well” latent factor from measures of quality of life, satisfaction with life, and well-being. We used multivariate modeling to identify variables related to living well measures and structural equation modeling to derive latent variables for 5 life domains and to examine the associations of these domains with living well.

Results: All 5 domains were individually associated with living well. When modeled together, the psychological characteristics and psychological health domain was the only independent predictor of living well [effect size, 3.55; 95% confidence interval (CI): 2.93-4.17], and effect sizes were smaller for physical fitness and physical health (1.23, 95% CI: −0.10 to 2.58), social capitals, assets and resources (0.67; 95% CI: −0.04 to 1.38), managing everyday life with dementia (0.33; 95% CI: −0.06 to 0.71), and social location (0.08; 95% CI: −2.10 to 2.26).

Discussion: Psychological resources, and the social, environmental, and physical factors that underpin positive psychological states, are potentially important targets for interventions and initiatives that aim to improve the experience of living with dementia.

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., J.M.T.).

IDEAL investigators L.C., I.R.J., C.R.V., S.M.N., A.M., C.Q., J.A.P., J.V.H., R.W.J., M.K., M.D.K., F.E.M., R.G.M., J.M.R., and J.M.T.: contributed to all aspects of the IDEAL project including design, supporting the conduct of field work, and data acquisition. L.C.: developed the original idea for this study and designed the approach in collaboration with the IDEAL team. F.E.M.: operationalized the study aims, acquired the data, and supervised the data analysis. Y.-T.W.: conducted the analysis and is guarantor of the analysis. L.C. and F.E.M.: wrote the first draft from a technical report of the analysis prepared by Y.-T.W.

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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