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.

Autor:	Frank L; RAND Corporation (LF), Arlington, VA. Electronic address: LFrank@RAND.org., Shubeck E; Alzheimer's Association (ES), Chicago, IL., 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., 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., Maslow K; The Gerontological Society of America (KM), Washington, DC., Gitlin L; Drexel University College of Nursing and Health Professions (LG), Philadelphia, PA., 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., 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., 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., 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., Nicholson BP; 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., 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., 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., 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., Epstein-Lubow G; Alpert Medical School of Brown University, Brown University School of Public Health, and Butler Hospital.
Jazyk:	angličtina
Zdroj:	The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry [Am J Geriatr Psychiatry] 2020 Apr; Vol. 28 (4), pp. 434-442. Date of Electronic Publication: 2019 Oct 28.
DOI:	10.1016/j.jagp.2019.10.015
Abstrakt:	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. (Copyright © 2019. Published by Elsevier Inc.)
Databáze:	MEDLINE
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