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The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers
Journal article   Peer reviewed

The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned 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 434-442
Apr 2020
DOI: https://doi.org/10.1016/j.jagp.2019.10.015
PMID: 31767451
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? Because models for engaging patients in research do not yet include guidance for inclusion of persons living with dementia (PLWD) in planning of major research meetings, the members of the first such group formed for a major research meeting evaluated Group functioning in order to inform successful implementation of future such groups.•What is the main finding of this study? Group success was attributed to addressing meaning of the group to members, ensuring logistics include appropriate supports, and ensuring bidirectional interaction and access for Group members and researchers involved with the scientific meeting planning. The Group Leadership Committee, which included researchers, was noted by members as particularly important in supporting successful member participation. Best practices for engagement between researchers and PLWD, generated by PLWD, include clearly defining group goals; attending to group recruitment in terms of type of dementia, severity, and progression; leveraging existing research experience of group members; addressing group governance with attention to member-led activities; and attending to group process and accommodating differing and changing needs of members.•What is the meaning of the finding? Self-evaluation by PLWD of their stakeholder group formation and implementation informs challenges similar groups may encounter and strategies to overcome them. A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation. PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit. Following the Summit, the Group reviewed their contributions and completed an evaluation of the Group process, identifying best practices to support future efforts. Group members were initially unsure about participating due to concerns about ability to contribute and concerns about disease progression. Members reported that participation was a positive experience, however, identifying Group-led governance and attention to Group work process as important contributors. In addition to giving input to the Summit and having the opportunity to interact with researchers, sharing personal experiences with each other was part of the value of the Group to members. Careful Group selection and attention to governance were among the Best Practices members. Despite initial uncertainty among members about participating as a Stakeholder Group to inform a national research meeting, members developed a successful process for governance, convening, and providing input to a major national research meeting. Group's self-evaluation yielded specific strategies likely to be useful in formation and implementation of future partnerships between researchers and persons living with dementia.

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12 Record Views
13 citations in Web of Science
15 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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