Health and Global Policy Institute (HGPI) was commissioned to conduct part of the FY2025 Ministry of Health, Labour and Welfare Health Promotion Project for the Elderly, titled “Research on the Research Needs of People with Dementia and Their Families,” which is funded by the Alzheimer’s Association Japan (a public interest incorporated association). As part of this project held online on Tuesday, February 3, 2026, and in person in Kyoto on Wednesday (National Holiday), February 11, 2026, HGPI organized workshops bringing together people living with dementia, their family members, and researchers.

The aim of this project is to explore what processes are needed to enable people with dementia and their families to participate in research, by implementing a pilot initiative based onThe James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) guidebook.

During the workshops, opinions gathered from prior focus group interviews were compiled into a “Wish List for Everyone” (a list of research topics) compiled by people with dementia and their families. Participants then engaged in small-group dialogues to discuss and exchange views on which research topics should be prioritized. In total, across both the online and in-person sessions, more than 45 participants took part,including 10 people living with dementia, 20 family members, and 15 researchers, and discussions were held in small groups.

HGPI has long advocated for the importance of involving people with dementia and their families in dementia research. These advocacy efforts have been reflected in the 2023 Basic Act on Dementia Policy and were also incorporated as a priority item in the Basic Plan for Dementia Promotion Measures approved by the Cabinet in 2024. (Reference: HGPI Policy Column (No. 53))

The optimal approach for involving people with dementia and their families in research needs further attention and investigation. Going forward, it is expected that methods will be developed to systematically organize the levels and forms of participation at each stage of the research process and to appropriately evaluate such engagement. (Reference: HGPI Policy Column (No. 65))

Further details of this project will be compiled in a report to be issued by the Alzheimer’s Association Japan.