[Event Report] Roundtable Discussion to Promote the Participation of People living with Dementia, Their Families and Caregivers in Medical Research on Dementia (February 4, 2025)
date : 3/24/2025
Tags: Dementia
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Health and Global Policy Institute (HGPI) has advocated for the necessity of globally coordinated multi-stakeholder dementia research since beginning its activities in the dementia field. In 2017, they proposed “Building Public-Private Partnership Frameworks in Dementia Research,” and have since regularly established forums for discussions on research promotion with domestic and international key opinion leaders, including people living with dementia and their families.
In 2023, HGPI compiled a policy recommendation titled “Building a Research and Development System Together With People Living with Dementia and Their Families to Drive Parallel Progress in Creating an Inclusive Society and Advancing R&D.” This policy recommendation advocated for the promotion of participation by people living with dementia, their families, and caregivers in “broadly defined dementia research,” which not only includes medical research such as enhancing diagnostic and treatment methods for causative diseases of dementia, but also a wide range of healthcare and welfare fields such as natural sciences, engineering, humanities, social sciences, and research and development of everyday products and services.
Based on these recommendations and discussions among stakeholders, The Basic Act on Dementia to Promote an Inclusive Society, enacted in 2023, specifically states: “In order to build a foundation for research contributing to the realization of an inclusive society… the promotion of participation of people living with dementia, their families and caregiver in such research…” (Article 20). Therefore, for the advancement of dementia research, it is expected that when people living with dementia their families and caregivers are implicated in research together with researchers, new insights, perspectives, and approaches will emerge, creating new value for research not only in civil society but also in academia.
Promoting the participation of people living with dementia, their families and caregivers in research requires a continuous forum for multi-stakeholder discussions to highlight issues and challenges and build consensus. This time, a roundtable discussion was held with multiple stakeholders including people living with dementia, families, academia, and industry representatives, with the aim of exchanging opinions for the purpose of establishing an ongoing conferential discourse for the advancement of dementia research.
[Speakers] (title omitted; in no particular order)
Takeshi Ikeuchi (Professor, Department of Molecular Genetics, Brain Research Institute Niigata University)
Mamoru Ichikawa (Visiting Scholar, Stanford University (2016) / Representative, Association of Medical Journalism; Visiting Associate Professor, School of Medicine, Hiroshima University / Manager of Fund Development and Public Policy, READYFOR, Inc.)
Takeshi Iwatsubo (Professor, Department of Neuropathology, Graduate School of Medicine, The University of Tokyo)
Tomoo Ogawa (Executive Director, Japan and Asia Clinical Development Department, Neurology, CEG Fulfillment, Eisai Co., Ltd)
Matsuyo Kamada (President, Alzheimer’s Association Japan)
Yumi Shindo (Depuity Director, Center for Cultivating and Enlightment for Healthy Longevity, Tokyo Metropolitan Institute for Geriatrics and Gerontology)
Yoshiki Niimi (Project Associate Professor, University of Tokyo hospital)
Naohisa Hatakeyama (Japan Drug Development and Medical Affairs, Eli Lilly Japan K.K.)
Masaaki Hirai (Representative, Mahoroba Club)
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