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

The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry
ISSN: 1545-7214
Titre abrégé: Am J Geriatr Psychiatry
Pays: England
ID NLM: 9309609

Informations de publication

Date de publication:
04 2020
Historique:
received: 09 09 2019
revised: 21 10 2019
accepted: 22 10 2019
pubmed: 1 12 2019
medline: 21 1 2021
entrez: 1 12 2019
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 31784409
pii: S1064-7481(19)30549-4
doi: 10.1016/j.jagp.2019.10.014
pii:
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't Research Support, U.S. Gov't, Non-P.H.S.

Langues

eng

Sous-ensembles de citation

IM

Pagination

421-430

Commentaires et corrections

Type : CommentIn
Type : CommentIn
Type : CommentIn

Informations de copyright

Copyright © 2019. Published by Elsevier Inc.

Auteurs

Lori Frank (L)

RAND Corporation (LF), Arlington, VA. Electronic address: LFrank@RAND.org.

Emily Shubeck (E)

Alzheimer's Association (ES), Chicago, IL.

Melanie Schicker (M)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Teresa Webb (T)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Katie Maslow (K)

The Gerontological Society of America (KM), Washington, DC.

Laura Gitlin (L)

Drexel University College of Nursing and Health Professions (LG), Philadelphia, PA.

Cynthia Huling Hummel (CH)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Edward K Kaplan (EK)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Brian LeBlanc (B)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Myriam Marquez (M)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Brenda Nicholson (B)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Greg O'Brien (G)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Louise Phillips (L)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Brian Van Buren (B)

Persons Living with Dementia Stakeholder Group, Care of E Shubeck, Alzheimer's Association (MS, TW, CHH, EKK, BL, MM, BN, GO, LP, BVB), Chicago, IL.

Gary Epstein-Lubow (G)

Alpert Medical School of Brown University, Brown University School of Public Health, and Butler Hospital, Providence, RI.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH