Shinkansen!

This post is courtesy of Andy Hyde, and was originally published on the Upstream website.  Upstream works with people affected by dementia to improve mobility services. Andy was part of a Scottish delegation to attend the Alzheimer Disease International (ADI) Conference in Kyoto in April/May 2017.

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After the great evening with the Dementia Friendly Japan Initiative the sharing continued with another gathering a few days later, this time in Tokyo. Thanks to arrangements made by Makoto along with Atsushi Matusbara and Daisuke Sawada at the Foundation for Promoting Personal Mobility and Ecological Transportation (or the “Eco-Mo Foundation”), I was invited to talk at a meeting of transport operators, academics, designers, and representatives from various disability groups.

EcoMo is working on a range of projects to achieve ‘barrier-free’ transport and environmental transport measures that they describe as ‘… activities to create a social environment that is friendly both to humans and to the earth’. Who could argue with that?

The day started with a trip on the Bullet Train or Shinkansen to Tokyo which was a real highlight! A fantastic experience …although it started with confusion as you have to put both tickets (travel ticket and seat reservation) in the machine at the same time – took me a few goes and a hurried conversation to work this out. It was a good reminder that travel is complicated if you don’t know the rules…

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But the trains are smooth, quiet, on schedule, super-frequent, accessible … and very fast.

 I liked the information on each seat – made it clear where you are, what’s nearby and where you’re going!

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Daisuke Sawada met me at Shinagawa, one stop before central Tokyo, and took me to the Kokuyo office which was hosting the event. The rooftop garden office and pool was slightly different to the usual Upstream workshop environment.

I felt very welcomed and an honoured guest. Around 60 participants came along – transportation professionals, academics, people with disabilities, architects, designers … a great mixture of experience and skills.

Atsushi Matsubara started off, presenting results from a survey that EcoMo had carried out to discover the thoughts of people affected by dementia regarding transport and travel services. Around 4.4 million people are living with dementia in Japan. Of the 380 people contacted, 190 responded and some key messages were:

  • 80% had faced a situation where confusion had made travelling difficult
  • a number of people reported that that they often mistakenly travel without money
  • access to public toilets during a journey is a major issue

Some transport operators had responded:

  • 11 reported that they had training materials for staff around disability/dementia, 3 of them had created materials themselves
  • 12 companies reported that they would welcome opportunities to learn more about dementia

There is recognition that there are many passengers travelling with dementia and also that transport for people living in care homes could be more appropriate too. There was talk of accreditation for employees and also the value of recognising their own personal experiences. This was all sounding very familiar and Atsushi shared his experience of witnessing support available for people affected by dementia in the UK… then it was my turn.

And a few minutes later 60 people were doing the Upstream thing, drawing their journeys through Tokyo and talking animatedly with each other about their different experiences … these pictures include some from Dementia Friendly Japan Initiative

After describing the project (with fantastic translation from Taka) we had a Q & A session where participants asked about driving with dementia, the problems with tickets, the colour of ramps that help people get onto buses, the inequalities of travelling with dementia and more. There was particular interest in the Gatwick Airport lanyard, and it was interesting to note that in the ADI conference pack there was a luggage tag that promoted a similar idea – to identify people who might require some assistance, or a seat. This seemed to be more widely known – a few people at the workshop had them tied to their bags and I’d noticed signs about these on Kyoto buses the day before. So it looks like quite a comprehensive approach although I’m not sure what operator training is part of the arrangement… [update – more information about this from the Kyoto Prefecture website]

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There was much more to talk about but we ran out of time. It was another great chance to exchange ideas, to learn from each other and to explore how we might work together. Again, Upstream’s approach was well received. In summarising, Atsushi Matsubara noted that the biggest message for him was the importance of involving people affected by dementia and that this approach was something to work towards in Japan. It made me think about how lucky we are in the UK to have a network of groups and individuals who are willing to give their time, energy and insights to helping projects like Upstream.

It’s easy to talk about collaboration and sharing but it truly felt as though Upstream, the Dementia Friendly Japan Initiative, the EcoMo Foundation, Fujitso laboratories and others are using similar language and have similar aspirations – to work towards inclusive design and service improvement to enable people affected by dementia and others who may need assistance to travel with confidence. We parted as new friends, talking right up to the Shinkansen departure gates, wondering how to turn our animated conversations into collaborative action in the future.

IMG_6873.jpgThanks again to Makoto, Atsushi Matsubara and Daisuke Sawada for their enthusiasm, collaboration and warm welcome!

 With thanks to Andy Hyde.

Hello Kyoto! An evening with the Dementia Friendly Japan Initiative

This post is courtesy of Andy Hyde, and was originally published on the Upstream website.  Upstream works with people affected by dementia to improve mobility services. Andy was part of a Scottish delegation to attend the Alzheimer Disease International (ADI) Conference in Kyoto in April/May 2017.

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Visiting the ADI conference gave me opportunities to reach out to see who I could connect while there and was lucky enough to be introduced to Makoto Okada, Director of the Co-Creative Social Ecosystem Project at Fujitsu Laboratories and also a leading figure in the Dementia Friendly Japan Initiative (DFJI).

We discovered a mutual interest in improving transport for people affected by dementia as DFJI has a special interest group focusing on transport. Makoto was kind enough to organise an evening gathering in Kyoto, coinciding with the conference, bringing together a group of around 30 people to learn about work in Scotland and Japan and to exchange ideas. Participants included occupational therapists, GPs and researchers.

Mr. Matsumoto, manager at Kyoto’s Regional Comprehensive Support Centre spoke about “Planning and managing SOS exercises using the bus in Kyoto.” described his work coordinating local transport providers to assist with people affected by dementia who are becoming lost when travelling around the city. By providing a central service that puts calls out to all transport providers, people are found quickly reducing the anxiety of all concerned. The crucial link here is that they have provided information and training to all parties concerned including the police. We saw a short video showing the system in action.

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Pictures from Dementia Friendly japan on facebook 

Luckily, a number of friends of Upstream were also at the conference – Philly Hare from Innovations in Dementia, James and Maureen McKillop along with Elizabeth from Life Changes Trust and so they were all able to join us for the evening too. So, in addition to me sharing what Upstream has been up to, we heard from Philly about other work in the UK, from Elizabeth from a funder’s perspective and importantly from James about his own experiences of travelling with dementia.

This all made for a lively group discussion as we compared experiences and different project approaches. Perhaps one of the most notable points was the extent to which people affected by dementia are getting involved in projects in the UK. The network of peer support groups such as DEEP groups that we have been lucky to work with is a precious resource that is, as yet, isn’t so established in Japan.

Equally, those of us from the UK noted the coordinated approach that Mr Matsumato had taken in training all the parties concerned. This should be a goal for us – engaging with all the unusual suspects as we sometimes call them – the many different players that contribute to travelling well with dementia.

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Championing the rights of people living with dementia – the VERDe project

This blog was first published on the Mental Health Foundation’s website by Dr Antonis Kousoulis, Assistant Director of Development Programmes at the MHF. 

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In the past ten years, the landscape has changed significantly and the profile of dementia has risen in policy, research and practice. The Prime Minister’s challenge on dementia 2020 gave a further boost to the interest in dementia care across the country.

Certain organisations, including ourselves at the Mental Health Foundation, have also advocated for a more preventative approach to dementia, especially in relation to the inequalities faced by people living with dementia and the significant co-morbidity with mental ill health. A growing focus on the links between public health and dementia is promising in reflecting how dementia is beginning to be seen through lenses that go beyond the traditional medical model. But we are not there yet.

Progress in dementia has stalled for too long because of a substantial but narrow focus on developing new pharmacological treatments, confusion around the understanding of the wider public of the range of conditions involved under the umbrella term, and lack of systematic application of human rights approaches in the relevant practice and research.

Thus, we are still facing considerable challenges in taking dementia into wider policy spheres, which is why a focus on fundamental values, equality principles and human rights is still urgently needed. We have tried to address this gap with the VERDe project.

The Values, Equalities, Rights and Dementia network (VERDe) has connected people with dementia, carers, practitioners, policy makers, services, organisations and communities across the UK. Through a series of events, VERDe has aimed at increasing awareness and understanding about how values, rights and equalities affect people with dementia and can help improve dementia policy and practice.

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VERDe has enabled productive conversations between experts by background and experts by experience. We have:

  • facilitated the sharing of positive stories of empowerment and hope
  • explored ways to support people in their transitions (e.g. into care homes)
  • recognised that people living with dementia should be treated as persons, not just patients
  • advocated for cross-agency communication and national policies informed by people
  • explained the human rights deficit that exists in dementia and how supported decision-making works.

But our collaboration and network does not stop here. We will keep working with our partners, including Innovations in Dementia and the Dementia Engagement and Empowerment Project to champion the voice of lived experience and help sustain this active community.

Above all, we will strive to remember what one of our dementia activists stated: that people diagnosed with dementia are humans and the people who care for those with dementia are humans too. Therefore, a lot of the issues we want to discuss are, above all, human rights issues. And we know how human rights issues can impact on people’s mental health.

“Taking Local Action”

So, the simplest intervention we can start with is to make sure that the human contact and emotional support for people living with dementia is always there.

VERDe has been coordinated by the Mental Health Foundation, supported by Innovations in Dementia, and funded by the Joseph Rowntree Foundation and the Life Changes Trust (which is funded by the Big Lottery Fund).