A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia

Background. Involving people with dementia as researchers is a relatively new element to Patient and Public Involvement (PPI) and there is little research in this area. This study aims to identify the benefits, the risks and the practical challenges of peer-research and to develop a model of good-practice in peer-research with people with dementia.

Methods. We ran a systematic search on PsycInfo, PubMed and Google Scholar. We included articles focusing on health and social care research and which are empirical investigations or discussion papers on peer-research. Given the limited literature in the field of dementia, we included studies on peer-research with populations of service users who share similar demographics (older people), experience of stigma (mental health service users) and exclusion from research (people with learning disabilities). We applied no restrictions on language and publication date.

Analysis. We synthesised data into three themes: the potential benefits, the potential risks and the practical challenges of peer-research. We developed a model of good practice. The European Working Group of People With Dementia (EWGPWD) reviewed our paper to comment on and add to the findings.

Results. We included 7 papers. Potential benefits of peer-research included obtaining enriched data and empowering people with dementia. Potential risks included the power differential between researchers and issues of representativeness. The practical issues for good practice included the training of peer-researchers, defining involvement and roles, working effectively with cognitive impairment and considering resource implications. The EWGPWD emphasised the need for training and the importance of equality issues.

Conclusion. Involving people with dementia in peer-research can generate several benefits, including empowerment and opportunities for inclusion for the peer-researchers and the research participants living with dementia, challenging academics’ traditional views on Di Lorito 2016 Pre print version 3 research processes and gathering enhanced research data. However, there remains a need for further research on the impact of peer-research in dementia studies.