We are delighted to announce that the Great Britain Sasakawa Foundation have agreed to fund an exciting new project to develop Rare Dementia Support (RDS) services in Japan. The project will involve a collaboration between the dementia teams at University College London (UCL) and The University of Osaka (UOsaka) and their wide networks of people living with rare dementias, their families and carers, and health and social care professionals.

Dementia is the leading healthcare challenge of our age, with more than 940,000 people in the UK and >4.6 million people in Japan currently living with dementia. Though dementia is typically perceived as an issue of ‘old age’ and ‘memory’, there are more than 100 different forms of dementia, varying widely in the age at onset, skills affected, impact on the family and support required.

Between May 2025 and April 2028, the UCL team led by Prof Sebastian Crutch, Nikki Zimmermann and Suzie Barker will share their experience, processes and models for running a national rare dementia service from a university base, working collaboratively and co-creatively with the UOsaka team led by Dr Maki Suzuki and Prof Manabu Ikeda, who will host the developing novel ‘RDS Japan’ service working with local, regional and national stakeholders.

Together the teams will pilot family support group meetings in 16 prefectures around Japan in collaboration with partner organizations, host workshops with health and social care professionals to raise awareness about rare dementias, develop language- and culturally-appropriate resources to share professional and lived experience strategies, advice and management tips to support people with different dementias at different stages, and evaluate the co-design of the novel RDS Japan services and critical role of patient and public involvement and engagement.

Emerging from the strategic partnership between our institutions and stimulated by the World Federation of Neurology Aphasia, Dementia and Cognitive Disorders specialty group meeting in Nara in April 2024 and a 2-day joint ageing and dementia workshop hosted by UCL Global Engagement in November 2024, the project offers an opportunity to move beyond our previous research collaborations to co-create a national-first service of direct impact and value for people living with or caring for and about those living with young onset, atypical and inherited dementias.

For more information about the project, please contact:
·        Maki Suzuki (The University of Osaka): msuzuki@psy.med.osaka-u.ac.jp
·        Sebastian Crutch (University College London): s.crutch@ucl.ac.uk