Public and participant involvement as a pathway to inclusive dementia research

IF 13 1区医学 Q1 CLINICAL NEUROLOGY

Alzheimer's & Dementia Pub Date : 2024-11-14 DOI:10.1002/alz.14350

Sarah Walter, RÍona McArdle, Emily A. Largent, Rebecca Edelmayer, Claire Sexton, Sandra Loyola Sandoval, Helen Medsger, Nancy Meserve, Roland Samaroo, Cynthia Sierra, Marlon M. P. Smeitink, Allison Gibson, Sarah Gregory, Diana Karamacoska, Iracema Leroi, Doris Molina-Henry, Aida Suarez-Gonzalez, Crystal M. Glover

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引用次数: 0

Abstract

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.

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公众和参与者参与是实现包容性痴呆症研究的途径

阿尔茨海默病及相关痴呆症（ADRD）领域迫切需要包容性研究，以确保研究的优先事项和成果适用于受影响最大的人群。我们认为，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，公众和参与者参与 (PPI) 都是实现最佳科学的途径。本立场文件旨在为痴呆症研究人员提供了解如何应用公众参与的证据。我们首先强调了痴呆症患者所经历的不平等，包括年龄歧视、认知障碍的耻辱感以及少数民族社区的健康不平等。然后，我们举例说明了 ADRD 在整个研究生命周期中的 PPI，从确定受 ADRD 影响者优先考虑的研究课题，到设计、分析、传播，再到转化为政策和实践。我们还提供了通过 PPI 在研究人员和社区之间建立并保持合作的建议。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Alzheimer's & Dementia 医学-临床神经学

CiteScore

14.50

自引率

5.00%

发文量

299

审稿时长

3 months

期刊介绍： Alzheimer's & Dementia is a peer-reviewed journal that aims to bridge knowledge gaps in dementia research by covering the entire spectrum, from basic science to clinical trials to social and behavioral investigations. It provides a platform for rapid communication of new findings and ideas, optimal translation of research into practical applications, increasing knowledge across diverse disciplines for early detection, diagnosis, and intervention, and identifying promising new research directions. In July 2008, Alzheimer's & Dementia was accepted for indexing by MEDLINE, recognizing its scientific merit and contribution to Alzheimer's research.