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People with dementia as research colleagues: the journey

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education and training, research

This post summarises the route we travelled in the PRIDE Study (PRomoting Independence in people with DEmentia) from a sentence in a grant proposal to working with 8 people with dementia as co-researchers undertaking data analysis.

The past thirty years has seen a dramatic shift in the active role people with dementia have in research: from the silenced voice, to the interview participant, to the expert advisor and now as co-researchers. As Peter Bates points out in his blog ‘Doing Interviews Together’ (https://idea.nottingham.ac.uk/blogs/posts/doing-interviews-together), the route to co-research is often a rocky one which involves careful navigation by all parties. Here is a summary of the route I took with 8 co-researchers all living with dementia, 3 clinical research colleagues and a colleague researcher.

1. Getting a road map. Claudio Di Lorito led a review of published studies involving people with dementia as co-researchers. At the time, there was only one study involving one person with dementia as a co-interviewer. Using information that reported about the experience of working effectively with ‘experts by experience’ in other conditions we developed a road map: a summary of practical things to think about that may make it easier for people with dementia and their supporters to consider themselves as co-researchers. The review highlighted the researcher’s responsibility to consider and plan transport, access to different research setting, timing of work and payment for work. 

2. Starting the journey. We needed ethical approval, which involved giving potential co-researchers’ information sheets and seeking consent from them to do the role. The PRIDE study was recruiting mainly from the community rather than hospitals, so our co-researchers did not need honorary contracts.

3. Reaching a T junction in the road. We were not able to work with people with dementia when collecting interview data. Some of the reasons were due to the rapid progress of the study. However sometimes family members were concerned about the physical and emotional challenges of research.

4. Making the turn. At this junction, we changed direction and decided to work with co-researchers during data analysis.

5. End of this road trip but not the journey. We ran two co-researcher workshops one in Hull and one in Nottingham. Four people at each site attended two half-day sessions and worked with the university researcher and NHS Trust clinical research staff to explore, consider and comment on interview data. Materials were prepared in accessible formats, shared and discussed in a variety of informal ways. The researcher had her preconceptions shifted as the co-researchers highlighted what they considered most important in the data. They sorted and grouped small segments of data in ways that the researcher had not considered.

6. Continuing the journey. All co-researchers (people with dementia, the researchers and clinical research staff) enjoyed the experience. Several co-researchers were interested in finding out other ways to be involved in research perhaps as PPI members. However, it is a long road to fully embed co-research and we need to continue to address issues such as: appropriate training and support; how to fully recognise and report co-researcher input in published papers; how to ensure equity of access to the resources that support research.

I welcome the opportunity to follow up conversations at Linda.birt@uea.ac.uk


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