By Dr Mayumi Hayashi FRSA, Research Fellow, King’s College London
Can we learn new pathways to dementia ‘care’ from Japan: where people with dementia are no longer care recipients – but citizens?
It’s 11am and chilly. Two men are busily valeting the gleaming cars in the Honda franchise and so keep their smart red jackets zipped up. They relish their work, polishing with pride. Nothing much distinguishes these two from their busy colleagues – except that they have been living with dementia for some years and came to work earlier after tea and a chat at their public-funded, dementia-specific day care centre DAYS BLG! run by a not-for-profit organisation.
DAYS BLG! operates from a residence in a quiet area in Machida City, west of Tokyo. Some members like cleaning cars – others like to shop for and then cook their lunch. Others go out to restock the sweet shop they run for neighbourhood children. A small group go on to enjoy lunch after belting out their favourite songs at a karaoke restaurant. For the more mellow, there are walks in the park admiring the early plum blossoms. From their 50s to late 80s these members are living with dementia – from the early to the later stages of the condition.
In Fujisawa City, west of Yokohama, the public-funded Multifunctional Community Facility (MCF) OTAGAISAN is run from a traditional Japanese home by a for-profit company. OTAGAISAN welcomes people with dementia at a range of stages. They are busily enjoying activities of their choice. Some are tending their allotments and sharing their skills with neighbourhood children who listen attentively. Inside, the fruit (or vegetables) of their labours – supplemented by surplus crops from neighours – are turned into pickles to be enjoyed by all.
OTAGAISAN also runs a sweet shop. Manga comics are very popular – but homework has to be done the world over. People with dementia lend a hand with this – and in return the grateful children help with stock taking and at the till. Among several highlights throughout the year is the annual party where over 200 come to make the traditional rice cakes – and see the New Year in. Handmade crafts made at the facility are on sale with profits paying for future trips and special meals.
While DAYS BLG! and OTAGAISAN are cutting-edge exemplars, across Japan there are now 3,800 day centres (supporting 61,000 people) and 4,000 MCFs (supporting 76,000 people), both offering 365 access at affordable costs. MCFs came in a decade ago providing a seamless, integrated round-the-clock health and social care one stop provision. The government sees this as a key community-based model supporting people with dementia to ‘live well’ at home for as long as possible.
“Driven by the success of DAYS BLG! and OTAGAISAN, Japanese day centres and facilities are increasingly trying to catch up with these two trail blazers”, Kumiko Nagata from the Tokyo Dementia Care Research and Training Centre states. In the same vein, Yuji Kawamura, Care & Welfare Director NHK TV, observes that “while earning money is not usual yet, volunteering – such as school crossing lollipop patrols, keeping public spaces tidy and cooking in day centres and facilities – is now widespread. Importantly, those in an advanced stage are participating in these activities”.
In 2011 the Japanese government reached a groundbreaking decision which encouraged paid work or volunteering for dementia service users, seeing them no longer as ‘care recipients’ but as ‘citizens’. People with dementia longed to make a contribution to their community. Now they could. This came about when managers and frontline care staff really began to:
- listen to the wishes and aspirations of people with dementia at all stages
- work together with people with dementia to achieve their wishes and aspirations
- build understanding and partnerships with businesses and the wider community.
Doing this demonstrated their belief that people with dementia had potential and the right to contribute to their community. Such engagement is not ‘therapeutic’ or part of their care package but crucial for their dignity, wellbeing, inclusion and citizenship. A hallmark of the Japanese approach is having flexibility at the core and citizenship as the goal of public-funded dementia care services. These are evolving to form a hub for dementia-friendly communities in Japan.
With dementia on the increase (currently 5 million are affected) it is now everybody’s business, and society is responding. As Toshio Machinaga, a social care journalist, stresses, ‘Our increasing engagement stems from people regarding dementia as their own destiny. With this as a baseline, they get involved…’ Japanese government, frontline care staff and the general public are responding by putting people with dementia centre stage. Could their achievements provide a pathway for the UK to follow?