Culture, consent, costs and care homes: Enabling older people with dementia to participate in research

Abstract

Objectives: To describe factors that support and inhibit recruitment and participation of people with dementia living in care homes.

Method: This article focuses on the methods used to recruit people with dementia to a longitudinal study that employed a mixed-method design to track events and care that older people with dementia experienced over two years in six care homes. A staged approach to recruitment was adopted involving separate meetings with staff, residents and relatives. Individual consent was secured with residents with dementia who could consent in the moment and for those without capacity, through mail and follow-up telephone contact with consultees. Data were collected on the frequency of meetings, issues raised by staff, consultees and people with dementia as well as the overall time taken to complete recruitment.

Results: Over five months, 133 older people with dementia were recruited (62% of sampling frame). The recruitment process was supported or hindered by the number of individuals and organisations that needed to be consulted, the care home culture, staff's understanding of how people with dementia can be involved in research, and how they interpreted their role as mediators, protectors and gatekeepers.

Conclusions: Care homes are isolated communities of care. To achieve the research objectives, researchers in the initial stages need to consider the philosophical underpinnings of individual care homes, and the politics of hierarchy both within the care home and between it, and health professionals. There is a need to develop credible infrastructures of support that enable people with dementia to participate in research.

Keywords:

• dementia
• care homes
• recruitment

Acknowledgements

This study has received financial support from the National Institute for Health Research (NIHR) Programme Grants for Applied Research funding scheme. The views and opinions expressed therein do not necessarily reflect those of Central and North West London NHS Foundation Trust, the NHS, the NIHR or the Department of Health.