Engaging individuals living with dementia as stakeholders.

The Alzheimer's Association has been convening individuals living with dementia as stakeholders for nearly 2 decades. This article outlines the evolution of, and lessons learned from, the Association's leadership in stakeholder engagement. It will also highlight the contributions of the Association's Early Stage Advisory Group in the areas of public policy, programming and resources, medical and scientific advancements, and public awareness. In addition, this article will discuss the ways in which the research community has come to recognize the importance of including the voices of persons living with dementia in their work and has looked to the Association for guidance and leadership. Last, it will describe the future directions of the Association with regard to increasing the influence and profile of these key stakeholders.

What Is Really Needed to Provide Effective, Person-Centered Care for Behavioral Expressions of Dementia? Guidance from The Alzheimer's Association Dementia Care Provider Roundtable.

In April, 2019, the Alzheimer's Association Dementia Care Provider Roundtable convened to discuss common challenges faced when implementing person-centered, non-pharmacological practices in long-term care and other settings that provide care and programs for persons living with dementia, and to develop relevant, specific guidance from the perspective of administrative leaders from 23 long-term and community-based care provider organizations (representing home, community-based, and residential care). Guidance related to 5 practice areas emerged from the facilitated discussion: having a foundational person-centered culture, conceptualizing behaviors as expressions and focusing on behavioral support, identifying antecedents and placing person-centeredness before protocols, modifying training to promote person-centered culture, and valuing implementation flexibility. In developing the practice guidance, a related list of priority areas for research and policy were also identified.

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.

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.

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.