A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study

PLAIN ENGLISH SUMMARY: Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research. This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or vision impairment in a European research project investigating the combined impact of dementia with hearing and/or vision impairment. We set up four Research User Groups (RUGs) of older people with dementia with age-related hearing and/or vision impairment and their carers based in the UK, France, Cyprus and Greece to advise our researchers. We provided training to group members to support their input to the research. We will use a questionnaire and interview people in our RUGs to understand what they thought of the training and their experiences of being part of the RUG. We will also interview researchers to understand if they thought the advice from the groups was useful. This study will help us to understand how to effectively involve older people with dementia and age-related hearing and/or vision impairment in research and what the benefits of involving older people with dementia in research are. ABSTRACT: Background Research to prevent and treat dementia is an international priority. Involvement of older people with dementia in the research is important to ensure the relevance and utility of the research outcomes in clinical practice to them. Efforts to involve such people in research are growing due to increased recognition of the usefulness of incorporating the views of older people with dementia into the research process. Research User Groups (RUGs) of older people with dementia and carers for people with dementia were set up in UK (Manchester), France (Nice), Cyprus (Nicosia) and Greece (Athens) to advise on the research. We report a protocol for a study which aims to evaluate i) the perceptions of RUG members of the usefulness of Research Awareness Training that was provided to support their involvement in the research and ii) perceived impacts of the involvement of older people with dementia and age-related hearing and/or vision impairment on research from the point of view of RUG members and researchers. Methods Both qualitative and quantitative methods will be used to evaluate the acceptability, appropriateness and satisfaction with Research Awareness Training and the perceived impact of involvement of RUGs on research. Focus groups interviews with RUG members and one to one interviews with both RUG members (n = 24) and researchers (n = 6) will be conducted to understand the perceived impacts of patient and public involvement on research from the point of view of older people with dementia, carers and researchers. Any comparative differences in cultural, attitudinal and environmental differences between RUGs in outcomes of training and impact across the four European sites will be reported. Discussion This study is unique in its exploration of the impact of the involvement of older people with dementia and age-related hearing and/or vision impairment in a large multi-site European dementia research study. This work will be crucial in informing understanding of how to effectively involve older people with dementia and age-related hearing and/or vision impairment and carers in dementia research to ensure research addresses the needs and priorities of older people with dementia and age-related hearing and/or vision impairment. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40900-018-0128-9) contains supplementary material, which is available to authorized users.