Co-research with older people with dementia: Experience and reflections

Abstract

Background

There is growing evidence that people with dementia want to participate in research and benefit from their involvement. However, little attention has been given to date to the potential to involve people with dementia as co-researchers, not just participants.

Aims

The paper discusses the implications for people with dementia of involvement in research as co-researchers.

Method

Older people with dementia participated in planning the research methods, conducting interviews and making sense of the findings.

Results

The project found that it is possible to involve older people with dementia in a meaningful way in research processes and that both co-researchers and participants can benefit significantly from their participation.

Conclusions

The project has wider implications for the development of participatory research with people with dementia and for interventions based on peer support.

Keywords:

• dementia
• older people
• co-researchers
• involvement
• identity

Acknowledgements

The author wishes to give full and grateful acknowledgement to the co-researchers and participants for devoting their time, energy and experience to this project. She would also like to acknowledge the contributions of the wider research team and partner agencies and thank the reviewers for their thoughtful and constructive comments.

Declaration of Interest: The project is funded by the National Institute for Health Research Service Delivery and Organisation Programme (Project No 08/1809/28). The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the Department of Health.

Notes

1 The research is funded by the National Institute for Health Research Service Delivery and Organisation programme, Project Number 08/1809/228.

2 All co-researcher and participant names are pseudonyms.