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.

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.

Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.