Caregivers’ beliefs about dementia: findings from the IDEAL study

Abstract

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study.

Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline.

Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition.

Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.

Keywords:

• Caregiver
• Common Sense Model
• dementia
• diagnosis
• illness representation

Acknowledgements

The support of the ESRC and NIHR is gratefully acknowledged. We would like to acknowledge the support of the following research networks: NIHR Dementias and neurodegeneration specialty (DeNDRoN) in England, the Scottish Dementia Clinical Research Network (SDCRN) and Health and Care Research Wales. We gratefully acknowledge the local Principal Investigators and researchers involved in participant recruitment and assessment within these networks. We thank the members of the ALWAYs group and the Project Advisory Group for their support with the study. We are extremely grateful to Yu-Tzu Wu for her support with statistical analyses and feedback on drafts of the manuscript.

Author contributions

Authors Quinn, Rees Jones, Martyr, Nelis, Morris, and Clare were involved in the original conception and design of the project. The lead author Quinn is responsible for the data analysis and interpretation, and for drafting the article. All authors have contributed to the critical revision of the article, and provided final approval of the version to be published.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data deposition

The IDEAL data will be deposited with the UK Data Archive upon completion of the study. Details on how the data can be accessed after this date will be made available on the project website www.idealproject.org.uk.

Additional information

Funding

The IDEAL study is funded 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. D. Kopelman, R. Litherland, A. Martyr, F. Matthews, R.G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, and J. Thom).