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, Brenda P. Nicholson, Greg O'Brien, Louise Phillips, Brian Van Buren, Gary Epstein-Lubow

Research output: Contribution to journalArticle

Abstract

Objective: 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. Methods: 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. Results: 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. Conclusion: 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.

Original languageEnglish (US)
JournalAmerican Journal of Geriatric Psychiatry
DOIs
StateAccepted/In press - Jan 1 2019

Fingerprint

Caregivers
Dementia
Research
Group Processes
Research Personnel
Practice Guidelines
Diagnostic Self Evaluation
Aptitude
Uncertainty
Disease Progression

Keywords

  • Dementia
  • participatory research
  • patient engagement
  • patient-centered research

ASJC Scopus subject areas

  • Geriatrics and Gerontology
  • Psychiatry and Mental health

Cite this

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. / Frank, Lori; Shubeck, Emily; Schicker, Melanie; Webb, Teresa; Maslow, Katie; Gitlin, Laura; Hummel, Cynthia Huling; Kaplan, Edward K.; LeBlanc, Brian; Marquez, Myriam; Nicholson, Brenda P.; O'Brien, Greg; Phillips, Louise; Van Buren, Brian; Epstein-Lubow, Gary.

In: American Journal of Geriatric Psychiatry, 01.01.2019.

Research output: Contribution to journalArticle

Frank, Lori ; Shubeck, Emily ; Schicker, Melanie ; Webb, Teresa ; Maslow, Katie ; Gitlin, Laura ; Hummel, Cynthia Huling ; Kaplan, Edward K. ; LeBlanc, Brian ; Marquez, Myriam ; Nicholson, Brenda P. ; O'Brien, Greg ; Phillips, Louise ; Van Buren, Brian ; Epstein-Lubow, Gary. / 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. In: American Journal of Geriatric Psychiatry. 2019.
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abstract = "Objective: 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. Methods: 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. Results: 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. Conclusion: 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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AU - Shubeck, Emily

AU - Schicker, Melanie

AU - Webb, Teresa

AU - Maslow, Katie

AU - Gitlin, Laura

AU - Hummel, Cynthia Huling

AU - Kaplan, Edward K.

AU - LeBlanc, Brian

AU - Marquez, Myriam

AU - Nicholson, Brenda P.

AU - O'Brien, Greg

AU - Phillips, Louise

AU - Van Buren, Brian

AU - Epstein-Lubow, Gary

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