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

Abstract

Plain English summaryInvolving 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 o...

Impact of involving people with dementia and their care partners in research: a qualitative study

“…(a) RUG members (n=34) who had participated in the RAT and in PPI activities and had the capacity to consent. Establishing whether potential participants with cognitive impairment can give informed consent to was assessed by staff trained, further details on the assessment of capacity are available elsewhere 40 ; (b) researchers who involved RUGs in their work.…”

“…It involves the exploration of longitudinal datasets to understand the interplay of hearing, vision and cognitive impairment, 33–35 the validation of assessments adapted for people with dementia and hearing and/or vision impairment, 36 and the evaluation of a home-based hearing and vision support intervention in improving quality of life for people with dementia. 37–39 As part of this programme, a dedicated work package on PPI 40 was embedded as a cross cutting theme ( figure 1 ) to involve older people with dementia and care partners. This involved establishing Research User Groups (RUGs) in Manchester (UK), Nice (France), Nicosia (Cyprus) and Athens (Greece) for PPI at each stage of the SENSE-Cog programme.…”

“…Each RUG site was managed and supported by a local PPI coordinator in each of the four sites. 40 We reported all features of the PPI process according to the GRIPP2 short form recommendations 30 (see online supplemental file 1 ) in this paper, and the full protocol involving the RUGs is published elsewhere. 40 …”

“…The published protocol 40 outlining the PPI activities pertaining to the entire SENSE-Cog programme, was established by the RUGs at the outset of the research programme. Additional PPI activities were added at different stages on an ‘as needed’ basis by local RUGs and to include local contextualised content for the PPI activities.…”

Protocol for the development of versions of the Montreal Cognitive Assessment (MoCA) for people with hearing or vision impairment

“…Four research user groups (RUGs) of people with dementia with age-related hearing and/or vision impairment and their support people were established in the UK, France, Cyprus and Greece to provide advice on the research 23. Research awareness training was provided to support involvement (based on the EQUIP training package24).…”