By Sebastian Crutch, RDS Director
The vision of Rare Dementia Support (RDS) is that all individuals affected by a young onset, atypical or inherited dementia – wherever they live – should have access to information, tailored support and guidance, and contact with others affected by similar conditions.
So we are really grateful to The Great Britain Sasakawa Foundation that over the next three years we’ll be working with Dr Maki Suzuki and Prof Manabu Ikeda and their colleagues from The University of Osaka to pilot a Rare Dementia Support service in Japan.
In September we (myself and RDS Head of Support Services Nikki Zimmermann) visited Kanazawa on Japan’s west coast, to deliver a joint teaching session on posterior cortical atrophy and frontotemporal dementia to clinicians at the International Psychogeriatric Association conference.
We also met with young onset dementia coordinators from around Japan to build confidence around working with people with different diagnoses and discuss plans to create in person peer support groups in different Japanese prefectures. We were thrilled at the level of interest and enthusiasm for developing these new support services together over the coming years.
We were also privileged to visit Share House Kanazawa, a remarkable intergenerational living space that blends student housing, senior housing with services, and child care facilities into a vibrant community hub. This innovative model with its communal kitchen and wellness services was of particular interest to us as we continue work on the Rare Dementia Support Centre in London, but we can’t yet envisage incorporating a natural hot spring or alpaca ranch.
On the final day we had the honour of attending a pilot young onset dementia peer group Soba noodle making activity. We first received instruction from a local Soba noodle making master before it was our turn to try our hands. As so often, an amazing bond developed quickly between people getting to meet others with shared experience, and sharing food together – especially food we had made ourselves – provided the background to sharing stories not just of challenge and struggle but strategies, encouragement and a mutual sense of empowerment.
We look forward to further supporting emerging services in Japan as part of the strategic partnership between UCL and The University of Osaka, and to finding opportunities to spread the word about rare dementias not just in the UK but around the world.
