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

Research output: Contribution to journalArticle

Abstract

Objective: 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. Methods: 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. Results: 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. Conclusions: The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.

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

Fingerprint

Caregivers
Dementia
Research
Research Personnel
Outcome Assessment (Health Care)
Guidelines

Keywords

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

ASJC Scopus subject areas

  • Geriatrics and Gerontology
  • Psychiatry and Mental health

Cite this

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

AU - Hummel, Cynthia Huling

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