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Working together in dementia research: reflections on the EVIDEM programme

Purpose– The purpose of this case study is to report and reflect on a recently completed five-year programme of research on dementia care and practice in England. This EVIDEM programme of research was specifically designed to influence services for people with dementia and their carers; several additional lessons emerged along the way that might shape broader research on ageing that includes older people and those who work with them.

Design/methodology/approach – This case study of the EVIDEM programme presents and discusses four lessons learned by the core research team – covering the implications of newly basing research inside the NHS, multi-disciplinary working across academic disciplines, communicating with diverse practitioners, and the impact of patient and public involvement on the research process. The paper reflects on communication between the NHS and academic communities, and the creation of new research capacity in dementia.

Findings – Collaborative working between academic disciplines is possible, given willing researchers and commitment to participating in frequent opportunities for dialogue and learning. In research in dementia these foundations are probably essential, given the growing scale of the problem and the small size of the research community, if we are to have a beneficial impact on people's lives. Lay expertise is a necessary ingredient of research programmes, not just for its co-design power, but for its ability to redesign projects when major problems arise. 

Research limitations/implications – This case study reports the subjective views of the research collaborators. While this raises the potential for bias, it offers an “insider” perspective of the research process and engagement in research leadership.

Originality/value – There are few reflections on research processes and management and this case study may be useful to academic researchers, to those working in the NHS with responsibility for research in different forms, and to older people's organisations who wish to hear of the value of older people's engagement in research advisory activity.

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Working with Older People

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