The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI.Highlights A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.

中文翻译：

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公众和参与者的参与是包容性痴呆研究的途径


阿尔茨海默病和相关痴呆症 （ADRD） 领域迫切需要包容性研究，以确保研究的重点和结果适用于受影响最大的人群。我们假设公众和参与者参与 （PPI） 是实现最佳科学的途径，无论是在为健康和社会政策提供信息的研究中，还是在治疗和预防 ADRD 的治疗研究中。本立场文件旨在为痴呆研究人员提供证据，以了解如何应用 PPI。我们首先强调痴呆症患者所经历的差异，包括年龄歧视、认知障碍的耻辱感以及少数群体的健康差异。然后，我们提供了整个研究生命周期中 ADRD 中 PPI 的示例，从确定优先研究主题到受 ADRD 影响的研究主题，再到设计、分析、传播和转化为政策和实践。我们还提供建议，以通过 PPI 在研究人员和社区之间建立和维持合作。亮点公众和参与者参与 （PPI） 的一个中心前提是研究人员和社区成员之间的合作关系。为了建立公平的伙伴关系，研究人员必须承认并理解研究的背景。这包括年龄歧视、痴呆症的耻辱以及对许多少数群体社区的持续歧视。有意义的伙伴关系包括选择、尊重、共同决策、访问、包容和代表性。值得注意的是，我们建议研究人员在研究过程的早期开始合作，并分享 PPI 对研究的影响。