Grenier Amanda, O'Connor Deborah, James Krista, Imahori Daphne, Minchopoulos Daniella, Velev Nicole, Tamblyn-Watts Laura, Mann Jim
Factor Inwentash Faculty of Social Work, University of Toronto, Toronto, ON, Canada.
Rotman Research Institute, Baycrest Centre for Geriatric Care, Toronto, Ontario, Canada.
Can J Aging. 2024 Dec;43(4):621-628. doi: 10.1017/S0714980824000217. Epub 2024 May 20.
People living with dementia (PLWD) may want to participate in research, but the guidelines and processes enacted across various contexts may prohibit this from happening.
Understanding the experiences of people with lived experiences of dementia requires meaningful inclusion in research, as is consistent with rights-based perspectives. Currently, the inclusion of PLWD in Canadian research is complex, and guidelines and conceptual frameworks have not been fully developed.
This research note outlines a three-year proof-of-concept grant on the inclusion and consent of PLWD in research.
It presents a brief report on some of the contradictions and challenges that exist in legislation, research guidelines, and research practices and raises a series of questions as part of an agenda on rights and inclusion of PLWD in research.
It suggests conceptual, legal, and policy issues that need to be addressed and invites Canadian researchers to re-envision research practices and to advocate for law and policy reform that enables dementia research to align and respect the rights and personhood of PLWD.
痴呆症患者（PLWD）可能希望参与研究，但不同背景下制定的指导方针和流程可能会阻碍这一情况的发生。
从基于权利的角度来看，要了解有痴呆症生活经历者的体验，就需要在研究中切实将他们纳入。目前，加拿大研究中纳入痴呆症患者的情况很复杂，相关指导方针和概念框架尚未完全建立。
本研究报告概述了一项为期三年的关于痴呆症患者参与研究及同意问题的概念验证资助项目。
报告简要介绍了立法、研究指导方针和研究实践中存在的一些矛盾和挑战，并提出了一系列问题，作为痴呆症患者在研究中的权利与纳入议程的一部分。
提出了需要解决的概念、法律和政策问题，并邀请加拿大研究人员重新审视研究实践，倡导法律和政策改革，以使痴呆症研究能够符合并尊重痴呆症患者的权利和人格。
