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Transforming Gerontological Research by Meaningfully Engaging Persons Living With Dementia

机译:通过痴呆症生活的有意义的人改变了庸医研究

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Abstract Whereas persons living with dementia have commonly been subjects of gerontological research, participation of persons with dementia in designing and conducting studies and in scientific research meetings has been rare in the United States. In recent years, person-centered research models have arisen which give persons with dementia and their caregivers core roles in the research enterprise. As “co-researchers” with academic/professional researchers, persons with dementia and their caregivers are engaged in all aspects of the research enterprise, jointly developing research questions and study designs, collecting and analyzing data, planning research meetings, and disseminating results. International studies have shown that conducting research in collaboration with the population that is being studied has potential to enhance the quality and appropriateness of research and has been identified as an essential component of studies examining the effectiveness of different approaches to care. This session spotlights innovative advances in gerontological research that meaningfully engages persons with dementia. First, the engagement of persons with dementia in scientific meetings is addressed drawing on the examples of the 2017 and 2020 National Research Summits on Care Services and Supports for Persons with Dementia and their Caregivers (i.e., Summits). Next, a study using a patient engagement framework for caregivers and individuals with mild cognitive impairment living at home is discussed. Finally, the Empowering Partnerships program, which prepares researchers, persons with dementia, and care partners to collaborate in conducting research is reviewed. Outcomes and challenges of these innovations are examined, and the need for academic/professional researcher roles to evolve is discussed.
机译:摘要虽然患有痴呆症的人通常是Gerontological Research的主题,在设计和进行研究中和科学研究会议上的痴呆症的参与在美国罕有很少见。近年来,既往的研究模式已经出现,使痴呆症和他们的护理人员在研究企业中的核心作用。作为学术/专业研究人员的“同事”,痴呆症及其护理人员的人员都从事研究企业的各个方面,共同开发研究问题和研究设计,收集和分析数据,规划研究会议和传播结果。国际研究表明,与正在研究的人口进行合作进行研究有可能提高研究的质量和适当性,并被确定为研究不同方法的有效性的研究的重要组成部分。本次会议聚焦了在痴呆症的有意义的地区研究中的创新进展。首先,在科学会议上与痴呆症的参与是在2017年和2020年国家研究首脑会议上的例子上进行护理服务的例子,并对痴呆症及其护理人员的人员(即,首脑会议)提供支持。接下来,讨论了使用患者参与的护理人员和具有温和认知障碍的个人的研究。最后,综述了赋予研究人员的赋权伙伴关系计划,患有痴呆症的人员和护理合作伙伴在进行研究中进行协作。审查了这些创新的结果和挑战,讨论了对学术/专业研究员作出的需求进行了探讨。

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