Relationship between depressive symptoms and capability to live well in people with mild to moderate dementia and their carers: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme

Abstract

Objectives

Depression is a common condition in dementia and has a substantial impact on quality of life and wellbeing. There is limited evidence on how depressive symptoms in the person with dementia impact on the carer, and vice versa. The aim of this study is to investigate dyadic relationships between depressive symptoms and capability to live well in both people with dementia and their carers and to examine whether people with dementia who do not have a carer are more vulnerable to the impact of depressive symptoms than those who have a carer.

Methods

Using a large cohort study of 1547 community-dwelling people with mild to moderate dementia and 1283 carers in Great Britain, a Bayesian analysis framework was developed to incorporate dyads (N = 981), people with dementia whose carers did not participate (N = 127), people with dementia who did not have a carer (N = 137), and dyads with missing data (N = 302) and estimate actor and partner relationships between depressive symptoms and capability to live well, which was expressed as a latent factor derived from measures of quality of life, life satisfaction and wellbeing.

Results

Depressive symptoms in people with dementia and carers had negative associations with capability to live well both for the individual and for the partner. Compared to those who had a carer, depressive symptoms had a greater impact on capability to live well in people with dementia who did not had a carer.

Conclusions

The impact of depression may extend beyond the person experiencing the symptoms. Future interventions for depressive symptoms should utilise this potential wider impact to understand and optimise treatment effects.

Keywords:

• Dementia
• depression
• quality of life/wellbeing
• epidemiology
• dyadic analysis

Acknowledgements

We are grateful to the three UK research networks, the NIHR Clinical Research Network in England, the Scottish Dementia Network (SDN) and Health and Care Research Wales, for supporting the study. We thank the local principal investigators and staff at our NHS sites, the IDEAL study participants and their families, the members of the ALWAYs group and the Project Advisory Group.

Disclosure statement

None

Funding

‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2 'Improving the experience of dementia and enhancing active life: living well with dementia' (Investigators: L. Clare, I. R. Jones, C. Victor, J. V. Hindle, R. W. Jones, M. Knapp, M.Kopelman, R.Litherland, A. Martyr, F. Matthews, R. G. Morris, S. M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom). ESRC is part of UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NHS, the NIHR or the Department of Health and Social Care. The support of the ESRC and NIHR is gratefully acknowledged. The funders had no role in design and conduct of the study, collection, management, analysis, and interpretation of the data, preparation, review, or approval of the manuscript, and decision to submit the manuscript for publication.

Author contributions

YTW and FEM developed the original idea and designed the approach. YTW conducted the data analysis and FEM supervised the analysis. YTW, LC, and FEM contributed to manuscript writing. YTW had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Data availability statement

The datasets generated and analysed during the current study are not publicly available due to the restrictions imposed in the original study but are available from the IDEAL study team on reasonable request.

Additional information

Funding

This work 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. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G.Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom). The funders had no role in design and conduct of the study, collection, management, analysis, and interpretation of the data, preparation, review, or approval of the manuscript, and decision to submit the manuscript for publication.