Health and Global Policy Institute hosted a “Round Table Dialogue – Let’s Talk About Research” as one of the initiatives to promote the involvement of people with dementia and their families in research, as specified in The Basic Act on Dementia to Promote an Inclusive Society (hereinafter referred to as the Dementia Basic Act).

In the Dementia Project, we categorize Patient and Public Involvement (PPI) in research, which has been gaining rapid attention in recent years, into three main stages: “Participation” (participating as research subjects), “Engagement” (engage into a part of the research), and “Involvement” (actively participating as a member of the research team, sharing leadership with researchers). Researchers are expected to understand that “research exists for the stakeholders (individuals, families, etc.) and those who will benefit from its results” and to appropriately promote patient and public involvement according to the type and content of the research.

Currently, in dementia research in Japan, “Participation” is far from smooth; particularly in medical research, researchers, universities and research institutions face numerous challenges in recruiting subjects. To achieve the inclusive society advocated by the Dementia Basic Act, the level of involvement needs to progress from mere participation to real involvement. By promoting stakeholder participation in medical dementia research, it is anticipated that new insights, perspectives, and approaches will emerge, bringing novel value not only to civil society but also to academia.

In organizing this round table dialogue, we hosted and collaborated with Dr. Yoshiki Niimi (Project Associate Professor, University of Tokyo Hospital), a notable researcher in the Alzheimer’s disease field, and the members of the “Orange Door Mitaka” dementia support group.

During the event, Dr. Niimi provided an overview of what research is and the role of medical research in dementia using simple and accessible language based on his personal experiences and research. After the lecture, participants raised questions and voiced their opinions and concerns about daily life and research, leading to an animated dialogue.