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首页> 外文期刊>The American journal of geriatric psychiatry: official journal of the American Association for Geriatric Psychiatry >The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers
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The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers

机译：痴呆症患者痴呆症策划痴呆症研究会议的经验。 来自国家研究首脑会议的经验教训，以及对痴呆症及其照顾者的人员的支持

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Objective: A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation. Methods: PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit. Following the Summit, the Group reviewed their contributions and completed an evaluation of the Group process, identifying best practices to support future efforts. Results: Group members were initially unsure about participating due to concerns about ability to contribute and concerns about disease progression. Members reported that participation was a positive experience, however, identifying Group-led governance and attention to Group work process as important contributors. In addition to giving input to the Summit and having the opportunity to interact with researchers, sharing personal experiences with each other was part of the value of the Group to members. Careful Group selection and attention to governance were among the Best Practices members. Conclusion: Despite initial uncertainty among members about participating as a Stakeholder Group to inform a national research meeting, members developed a successful process for governance, convening, and providing input to a major national research meeting. Group's self-evaluation yielded specific strategies likely to be useful in formation and implementation of future partnerships between researchers and persons living with dementia.
机译：目的：召开痴呆症患者利益相关者小组（PLWD），以支持美国一次大型痴呆症研究会议的工作。本次考试的目的是为PLWD和研究人员提供实施小组的步骤和指导，以便在研究会议规划和参与方面进行合作。方法：PLWD每月召开一次会议，为2017年痴呆症护理研究峰会的议程提供投入，一些小组成员也出席了峰会。峰会之后，该小组审查了他们的贡献，并完成了对该小组进程的评估，确定了支持未来努力的最佳做法。结果：由于对贡献能力和疾病进展的担忧，小组成员最初不确定是否参与。成员们报告说，参与是一种积极的体验，但是，他们认为小组领导的治理和对小组工作过程的关注是重要的贡献者。除了为峰会提供投入，并有机会与研究人员互动外，相互分享个人经验也是小组成员价值的一部分。谨慎的团队选择和对治理的关注是最佳实践成员之一。结论：尽管成员最初不确定是否作为利益相关者群体参与国家研究会议，但成员们制定了一个成功的治理、召集和为重大国家研究会议提供投入的流程。该小组的自我评估产生了一些具体的策略，可能有助于研究人员和痴呆症患者之间未来伙伴关系的形成和实施。

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