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.
With the emergence of new clinical trial data on disease‐modifying therapies in several. Alzheimer's disease (AD) studies, the Alzheimer's Association convened individuals living with AD to gain their perspective on meaningfulness and new treatments. A total of 30 Alzheimer's Association National Early Stage Advisory Group members participated in a focus group or an online survey to gain insights on what is wanted from a first‐in‐class treatment that could stop the progression of their disease at the earliest stage. Participants felt that researchers and regulators need to consider personal meaningfulness alongside clinical meaningfulness. At the same time, individuals living with AD felt that access, education, choice, and affordability were all important considerations moving forward.
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