%0 Journal Article
%T Consent and Inclusion of People Living with Dementia (PLWD) in Research: Establishing a Canadian Agenda for Inclusive Rights-Based Practices.
%A Grenier A
%A O'Connor D
%A James K
%A Imahori D
%A Minchopoulos D
%A Velev N
%A Tamblyn-Watts L
%A Mann J
%J Can J Aging
%V 0
%N 0
%D 2024 May 20
%M 38764147
%F 2.138
%R 10.1017/S0714980824000217
%X <B>BACKGROUND: </B>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.<BR><B>OBJECTIVE: </B>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.<BR><B>METHODS: </B>This research note outlines a three-year proof-of-concept grant on the inclusion and consent of PLWD in research.<BR><B>RESULTS: </B>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.<BR><B>CONCLUSIONS: </B>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.