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Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers
Journal article   Peer reviewed

Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers

Lori Frank, Emily Shubeck, Melanie Schicker, Teresa Webb, Katie Maslow, Laura Gitlin, Cynthia Huling Hummel, Edward K. Kaplan, Brian LeBlanc, Myriam Marquez, …
The American journal of geriatric psychiatry, v 28(4), pp 421-430
Apr 2020
DOI: https://doi.org/10.1016/j.jagp.2019.10.014
PMID: 31784409
Featured in Collection :   UN Sustainable Development Goals @ Drexel

Abstract

Dementia participatory research patient engagement patient-centered research
•What is the primary question addressed by this study?—Given the lack of prior US demonstrations of scientific conferences on dementia created with sustained input from persons living with dementia (PLWD), we examine the model used to collect and incorporate input from PLWD for the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, and we detail the Group's contributions to the Summit.•What is the main finding of this study?—The participation model described here yielded recommendations for new research on dementia care from PLWD, including for new care practices to improve dementia treatment; access to care and services; strategies to promote participation in clinical trials; the experience of living with a cognitive disorder; best practices for working with family members, caregivers and proxy decision makers; and use of new terminology and language for public education. The Group led to inclusion of PLWD as Summit presenters and incorporation of Group input into Summit agenda and research recommendations.•What is the meaning of the finding?—Despite researcher skepticism and lack of precedent, this PLWD Group successfully contributed to the agenda and the output of a major national research meeting on dementia. Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group. The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations. The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD. The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.

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23 citations in Web of Science
24 citations in Scopus

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UN Sustainable Development Goals (SDGs)

This publication has contributed to the advancement of the following goals:

#3 Good Health and Well-Being

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Collaboration types
Domestic collaboration
Web of Science research areas
Geriatrics & Gerontology
Gerontology
Psychiatry
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