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. 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.

中文翻译：

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在欧洲多地点研究中评估老年痴呆症和与年龄相关的听力和/或视力障碍的影响的协议

人们越来越认识到让老年痴呆症患者参与研究对于确保研究对老年痴呆症患者具有相关性和有益性很重要。但研究人员需要知道如何最好地让患有痴呆症的老年人参与进来，并能够展示让患有痴呆症的老年人参与痴呆症研究的好处。本文描述了一项研究计划，旨在探索老年痴呆症和与年龄相关的听力和/或视力障碍患者参与一项欧洲研究项目，调查痴呆症与听力和/或视力障碍的综合影响。我们在英国、法国、塞浦路斯和希腊设立了四个研究用户组 (RUG)，由患有与年龄相关的听力和/或视力障碍的老年痴呆症患者及其护理人员组成，为我们的研究人员提供建议。我们为小组成员提供培训，以支持他们对研究的投入。我们将使用问卷调查并采访我们 RUG 中的人员，以了解他们对培训的看法以及他们作为 RUG 成员的经历。我们还将采访研究人员，以了解他们是否认为这些小组的建议有用。这项研究将帮助我们了解如何有效地让患有痴呆症和与年龄相关的听力和/或视力障碍的老年人参与研究，以及让患有痴呆症的老年人参与研究的好处是什么。背景 预防和治疗痴呆症的研究是国际优先事项。老年痴呆症患者参与研究对于确保临床实践中研究结果对他们的相关性和实用性非常重要。由于人们越来越认识到将老年痴呆症患者的观点纳入研究过程的有用性，让这些人参与研究的努力正在增加。在英国（曼彻斯特）、法国（尼斯）、塞浦路斯（尼科西亚）和希腊（雅典）成立了老年痴呆症患者研究用户组 (RUG) 和痴呆症患者护理人员，为研究提供建议。我们报告了一项研究方案，该方案旨在评估 i) RUG 成员对研究意识培训有用性的看法，该培训旨在支持他们参与研究，以及 ii) 老年痴呆症和老年患者参与的感知影响- 从 RUG 成员和研究人员的角度来看，与研究相关的听力和/或视力障碍。方法 定性和定量方法都将用于评估研究意识培训的可接受性、适当性和满意度以及 RUG 参与研究的感知影响。将对 RUG 成员进行焦点小组访谈，并对 RUG 成员 (n = 24) 和研究人员 (n = 6) 进行一对一访谈，以从老年人的角度了解患者和公众参与对研究的感知影响与痴呆症、护理人员和研究人员。将报告 RUG 在四个欧洲站点的培训结果和影响方面的文化、态度和环境差异的任何比较差异。讨论 这项研究在探索大型多地点欧洲痴呆症研究中老年痴呆症和与年龄相关的听力和/或视力障碍的影响方面是独一无二的。这项工作对于了解如何有效地让患有痴呆症和与年龄有关的听力和/或视力障碍的老年人和护理人员参与痴呆症研究至关重要，以确保研究解决患有痴呆症和与年龄有关的听力障碍的老年人的需求和优先事项和/或视力障碍。