[Registration Open] (Webinar) HGPI Special Seminar Commemorating Dementia Month and World Alzheimer’s Month “Patient and Public Involvement Experience in Dementia Research by a Person Living with Dementia” (September 9, 2025)

*An additional speaker has been confirmed for this webinar. (September 2, 2025)
*The scheduled ending time has been changed from 6:15 p.m. to 6:30 p.m (JST). (September 2, 2025)

This special edition of the HGPI Seminar is being held to commemorate Dementia Awareness Month and World Alzheimer’s Month in 2025, under the title ‘Patient and Public Involvement (PPI) Experience in Dementia Research by a Person Living with Dementia.’

Patient and Public Involvement (PPI) is an essential initiative for advancing medical research and returning research outcomes that are more relevant to society, and it has gained increasing international attention in recent years.
In the UK, the National Institute for Health and Care Research (NIHR) is promoting initiatives aimed at improving the quality of medical research, ensuring social validity, and realizing research that incorporates the perspectives of patients, their families, and other caregivers. This includes requiring research grant applications to include specific policies and implementation plans for PPI in their research proposals. Furthermore, in countries such as Canada, Australia, and the United States, there is a growing movement to establish PPI as a foundation for research, with central medical research institutions in each country actively promoting PPI.

Japan is no exception, with the Japan Agency for Medical Research and Development (AMED) creating the ‘AMED Patient and Public Participation (PPI) Guidebook’ as a first step towards collaboration between patients and researchers, and promoting PPI initiatives that contribute to better research and development, specifically with active efforts in the fields of cancer and mental illness.

In response to these domestic and international trends, the momentum for promoting PPI is also growing in the field of dementia research in Japan. The 2024 Basic Plan for Promoting Dementia Policies includes an indicator related to ‘dementia research projects that reflect the opinions of people with dementia and their families’ as one of its four key objectives. This clearly establishes the necessity of promoting PPI in dementia research as a policy goal. On the other hand, awareness of the significance of PPI in dementia research and its specific implementation methods is not yet fully understood and has not yet fully penetrated the field; therefore, there is an urgent need to deepen understanding of PPI in medical research and dementia research. In order to further promote PPI in dementia research in Japan, it is necessary to share the voices of people with dementia from other countries with Japanese people with dementia and researchers, and to create opportunities for both researchers and practitioners to learn from each other.

In this special edition of the HGPI Seminar, we will invite Bobby Redman, who is actively involved in PPI in dementia research while also working as an advocate for people with dementia in Australia, to share her experiences, challenges, and the significance of participating in research from the perspective of a person with dementia. Additionally, Sarah Jay, Consumer Engagement Coordinator at Dementia Australia, who has been instrumental in supporting the participation of individuals with dementia in research alongside Ms. Redman, will join the discussion to address the barriers and strategies involved when individuals with dementia participate in research.

We hope this seminar will provide Japanese dementia researchers and individuals with dementia with a concrete opportunity to deepen their understanding of how PPI in dementia research has been created, implemented, and promoted. We also hope that this event will serve as a catalyst for further development of PPI in Japanese dementia research.

*We are pleased to announce that Ms. Shinobu Yamanaka, Representative Director of the Japan Dementia Working Group, will join the seminar as a special commentator. Following the presentations by Ms. Redman and Ms. Jay, she will share her experience and perspectives as a person living with dementia in Japan, namely her expectations for the future of meaningful involvement for people with lived experience in dementia research in the country.

[Event Overview]

• Date & Time: Tuesday, September 9, 2025; 17:00-18:30 JST (18:00-19:30 AEST)
• Format: Online (Zoom webinar)
• Language: Japanese and English (with simultaneous interpretation)
• Participation Fee: Free
• Capacity: 500 participants

■Speaker Profiles (title omitted, in no particular order):

Bobby Redman (Living with FTD / Retired psychologist / Former Chair, the Dementia Australia Advisory Committee)
Bobby Redman is a retired psychologist, living with FTD. Since her diagnosis, in 2016, she has been a passionate dementia advocate, determined to improve the lives of people with dementia and their carers.
Bobby recently retired as Chair of the Dementia Australia Advisory Committee, working for and with people living with dementia around Australia. She currently sits on numerous committees, focusing on public health and disability. As a strong supporter of dementia research, she has been involved in more than 50 research projects, both as a participant and as an advisor and / or investigator, and has presented at many Australian and International Conferences. Bobby has strong community ties and is an active Rotarian, holding the position of Rotary District Chair of the Dementia Awareness and Support Committee. In 2020, she was greatly honored to be a NSW finalist for Senior Australian of the Year, for her community and dementia advocacy work.

Sarah Jay (Consumer Engagement Coordinator (Research), Dementia Australia)
Sarah is the Consumer Engagement Coordinator (Research) at Dementia Australia. The role is centered around supporting people with a living or lived experience of dementia to engage in research projects, liaising with researchers and projects to build capacity for meaningful engagement of people with living or lived experience of dementia in research. Previously, Sarah worked as a researcher where her PhD and the work that followed, focused on understanding the impact of shift work for sleep, health, safety, and wellbeing.

Shinobu Yamanaka (Representative Director, Japan Dementia Working Group)
Ms. Shinobu Yamanaka was born in 1977, and she is currently residing in Kochi Prefecture. In 2019, at the age of 41, she was diagnosed with Young-onset Alzheimer’s disease and as a result, retired in 2021 after working for 15 years as a mobile phone sales representative. In April 2022, she founded the general incorporated association Second Story. In October of the same year, she opened the community-based day care service Day Service Happy in Konan City, and in 2024 expanded its services to Kochi City as well. In July 2022, she was appointed as a “Kochike Kibou (Hope) Ambassador” by Kochi Prefecture. In April 2024, she became a member of Global Dementia Expert Panel (International Member) of Alzheimer’s Disease International (ADI). In April 2025, she was also diagnosed with Dementia with Lewy Bodies, and in June of the same year, she assumed the position of Representative Director of the Japan Dementia Working Group. Her publications include Hitori Janai-ki (You Are Never Alone): Why I, Diagnosed with Dementia, Started a Day Care Service (Chuohoki Publishing, 2025).