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.

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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. 

Antonis Kousoulis

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).

Travelling Well with Dementia

This blog was written by Andy Hyde from Upstream, reflecting on their conference ‘Travelling Well With Dementia’, held on the 7th December 2016.

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Planning a journey. We’d all done it in order to arrive that day but maybe not really thought about it too much. We might have put up with a frustrating web site, weighed up cost-versus-convenience or different ways to get to the Festival Theatre. But what if you’re living with dementia and you’ve lost the confidence to even consider such a journey?  This was just one of the topics that we mulled over in discussion groups at Upstream’s Travelling well with Dementia event last week.

In recent months we’ve been bumping into lots of interesting people, hearing about their projects and initiatives and making connections around mobility, transport and travelling with dementia.

So we thought it would be good if Upstream could start joining up some of these conversations, connecting people and start turning talk into action.

Last week’s event at the Edinburgh’s Festival Theatre was our first attempt at doing this. Around 60 people travelled from across the UK to hear about Upstream and more. We’re busy writing up the outputs of the discussions and we’ll share these soon. In the meantime, here’s a brief summary of the day…

As participants arrived we drew our journeys and shared our stories of our trip to the venue – just like we do in our Upstream workshops.  Rich stories emerged about the highs and lows of getting out and about.

Tommy Dunne opened the event with humour, warmth and some hard-hitting truths about travelling with dementia.  After many years working in the transport industry, Tommy now co-chairs the Service Users Reference Forum (SURF) in Liverpool and works with transport operators to help them understand the realities of travelling with dementia, using his own experiences.  Tommy gave us some great context and insight to start the afternoon off, describing his experiences of travelling by train and bus and the need for a greater understanding from operator staff and fellow passengers alike. A key message from Tommy was the need to enable people to travel in order to reduce the very real dangers of loneliness and isolation.

It was stories like this that prompted us to start Upstream. Wendy Mitchell had also written a timely blog post the day before about her experiences of travel – unfortunately Wendy couldn’t join us but we shared some key points from her post with participants.

We shared what we’re learning at Upstream and talked about developing models for shared experiences which allow transport operators to work together with people affected by dementia.  We can only respond to the challenges of travelling if we move from dementia awareness to a deeper understanding of how a service currently works (or not) for people living with dementia and develop a vision for a new reality where transport always acts as an enabler rather than a barrier. Upstream could facilitate the experiences and conversations that can lead to this understanding and then help to make service redesign happen.

Paula Brown from the Arora Dementia Friendly Community based at An Lanntair in Stornoway, touched on the work that we’ve been doing together in the Western Isles, including the workshops at Stornoway airport that might hopefully lead to involving people affected by dementia in reviewing airport services. Oh, and some of those remote bus stops we’d visited on Lewis…

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Similarly, Sarah Geoghegan from Alzheimer Scotland reflected on Upstream workshops in Aberdeen and our connections with Aberdeen airport. We have engaged with a range of staff there and, following an Upstream workshop and several Dementia Friends sessions, the airport terminal management are interested to explore how we can involve people affected by dementia in reviewing airport services.

Lee Glen from Dementia Friendly Dunbar gave some personal reflections on the shared journey we took with Virgin Trains from Dunbar to Waverley Station and noted how several people in the group had learned a good deal about the assistance that is available to them when travelling by train.

James McKillop told us about an experiendriving-with-dementia-front-pagece that we encounter on a regular basis in our workshops and discussions – giving up driving. James drove for a number of years after a diagnosis of dementia but after his application for an extension to his licence was refused he experienced a difficult time coming to terms with not being able to legally drive even though he felt capable.

He told of his experience of eventually driving again, under controlled conditions.

It was a powerful story, emotional and yet hopeful. You can read more about James’ story here.

We were lucky enough to have Samantha Berry from OCS at Gatwick Airport join us to talk about their lanyard scheme, an option for passengers with hidden disabilities to discretely alert airport staff to their need for a little more time or help. As Samantha pointed out, so many people at the airport wear a lanyard that another doesn’t really stand out although it’s distinctive design is known to staff. It seems as if the scheme is popular and there are plans for trying the lanyard in other airports. Samantha also pointed us to Challenging for Change – an OCS report on disabled passengers’ experience of air travel – and the imminent publication of the Civil Aviation Authority’s new guidelines on making air travel more accessible for passengers with hidden disabilities.

Jill Mulholland told us about the development of the Scottish Government’s Accessible Travel Framework ‘Going Further’, working with people with a range of conditions to set out a roadmap for mobility operators to include people with disabilities in the design of new transport services.

We then discussed a range of topics that can be a challenge when travelling with dementia. In addition to planning a journey, we considered going to a hospital appointment, making a connecting (flight/taxi/bus/train…), buying a ticket, going on holiday and others.

To finish up we heard from Chris McCoy, Head of the Accessible Tourism Programme, at VisitScotland followed by Terry Dunn CEO of the ESP Group. Both Chris and Terry reminded us that people want to continue to travel to visit friends, family and destinations. They want to continue to take a holiday … this is a market that transport operators and related organisations have an opportunity to develop products and services for. The key to creating sustainable businesses will be to work closely with people living with dementia to truly understand the challenges and develop solutions using an inclusive design approach.

We think this was the first time that people from transport, health, government, design, the third sector and more had gathered to consider the range of issues that are emerging around the need to enable people affected by dementia to continue to travel well. However, as Agnes Houston reminded us via Twitter that morning, it’s good to talk and listen but we need to turn our words into action if we’re to make a real impact.

This is the key aim for Upstream and, we hope, for those that joined us last week.

 

Summer baking at Solas

This week we welcome guest blogger Paula Brown, Dementia Friendly Communities Project Co-Ordinator at an Lanntair.  an Lanntair run dementia friendly projects in the Western Isles that are funded by the Life Changes Trust.  That means we get a free scone!

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We did a spot of summer baking at Solas Day Centre today.  Strawberries and clotted cream over fresh, warm scones.

I was quite surprised at how dementia strips confidence – I heard so many worries about feeling incapable. ‘Oh no, I can’t.’ ‘I used to but not now.’ ‘Oh no, you do it.’ ‘My hands can’t do it.’

But gently making a start, asking about how to do it – ‘do we add salt?’ ‘Should we mix the butter and sugar together first or rub the butter into the flour?’ – I found myself taking a step back as everyone joined in with quips ‘There’s a cow out back for the milk!’ and I played along with ‘I couldn’t catch the cow so I had to buy a pint of milk’.

Three ladies joined in with me weighing, measuring, discussing recipes, rolling, cutting, brushing with egg and the scones baked up perfectly so everyone could enjoy eating them. The conversation went into baking and fruit growing and it was a natural collaborative effort to clean up and wash up.

The recipe was (we made 17)

Summer Baking at Solas

  • 1lb (450g) SR flour
  • 4oz (125g) butter, a pinch of salt
  • 2pz (50g) caster sugar
  • we measured 350ml of milk but only used about 320ml of it
  • You need a soft dough that isn’t too sticky
  • 1 beaten egg to glaze

We rubbed the butter into the flour, stirred in the sugar and salt and mixed in the milk. We dusted the table with a little flour and gently flattened the dough to around an inch deep and then cut out rounds with a cookie cutter. A quick brush with beaten egg and they were in the oven for about 15 minutes.

They were not even cold before they were all gone!

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Living well with dementia: diagnosis is key

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Today kicks off Dementia Awareness Week in Scotland. Richard Baker, Team Leader of the Age Scotland Early Stage Dementia Project, which is funded by the Life Changes Trust, talks about tackling the stigma and how early diagnosis is key to living well with dementia.

This week Age Scotland will be joining Alzheimer Scotland and other organisations working for better support for people with dementia to promote the need for better support and early diagnosis.

This is a key concern for Age Scotland through the work of our Early Stage Dementia Project, supported by the Life Changes Trust. Early diagnosis for someone with dementia can make a huge difference to their ability to live well with the condition. The Scottish Government has made dementia a national priority, and as part of this has introduced a commitment to provide one year’s support for everybody who has been diagnosed with dementia for a year after their diagnosis. This support is provided by link workers who help people with dementia understand the illness, manage symptoms, maintain their connections with their local community and help them make plans for their future.

However, while there is a huge amount of work going on to raise dementia awareness and tackle stigma around the illness, there is still a huge amount to do. Depending on the measure used, either a third or a half of people who have dementia in Scotland have not yet received a diagnosis. A UK survey by the Alzheimer Society found that more than half of people seeking a diagnosis for dementia have delayed going to their GP by at least a year and nearly two-thirds of people fear a diagnosis would mean that their life is over.

But people can and do live well with dementia, and support in the early stages is crucial to ensuring this can happen. That is why it is so important to tackle myths and stigma around dementia and make more people aware of the benefits of early diagnosis. At Age Scotland we meet people with dementia who are still contributing to their communities and are the leading voices campaigning for improved dementia services. Their example shows that if people take early action if they are worried about their memory or struggling with other activities, they can still have a rewarding life even if they do receive a dementia diagnosis. Dementia Awareness Week is a great opportunity to highlight this message, and it is vital the work to make all our communities dementia friendly and dementia aware continues all year round.

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Age Scotland’s Early Stage Dementia Team

To find out more about Age Scotland’s work around Early Stage Dementia visit their website or contact Richard Baker at Richard.Baker@agescotland.org.uk

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A day in the life of a peer mentor co-ordinator

A few weeks ago, we posted a blog which described a day in the life of a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  This blog describes a day in the life of by Hazel Waddell, who co-ordinates the peer mentors for VOCAL. VOCAL provide peer support to carers of people with dementia. This service is one of the Trust’s 12 funded dementia peer support and befriending projects.

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My role at VOCAL is quite complex as I wear a few hats as Carer Support Worker.

One of the newest bits of work I am involved with is VOCAL’s peer mentoring project.  We had a very small pilot of this kind of work about 18 months ago and have relatively recently been awarded Life Changes Trust funding to further develop this work to support a much larger number of carers of people with dementia.

The pilot was led by my line manager and we are working together to develop the work further. Today we met to plan the recruitment of a few more carers to become mentors.  We have already trained a group and as they are settling well into their roles well we are looking to expand the team to make it as diverse as possible.  While there is lots of common ground in people’s stories, we are keen to ensure we have a good mix of male and female, ages and caring relationships and experiences to ensure the best possible service for clients.  At today’s meeting we discussed approaching a few carers who have used VOCAL’s services previously to ask if they would be interested in sharing their stories in this way.

Next on my peer mentoring to-do list is to log in to our case management system to see if my Carers Support Worker colleagues have made a referral for a mentor.  There are two referrals waiting for me which is not too much of a surprise as everyone in the team is able to see the benefits to carers of being mentored by someone who has lived experience of caring for a family member with dementia.

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The Carers Support Workers who have made the referrals have read the mentor profiles and suggested the mentor they think would be the best fit for their client’s needs and have listed the times that suit their client the best.  This is great and it means I can make contact with the mentors to see if they are free to meet (as always checking that the carer and mentor don’t live too close together or know each other in other parts of their life) and book a room here at the Carers Centre (the mentors and carers always meet at the Carers Centre for their first meeting and then after that meet in cafes).  I send the mentors emails and wait for replies.  This should not take too long as they are very good at responding (once again I think how helpful smart phones are to our work!).

Next I switch hats and contact some of the clients I am working with as a Carers Support Worker. I really enjoy the carer support work and I think it really helps me with my peer mentor coordinator role as the work, while different to the mentoring role, has some similar lessons, pleasures and challenges, all of which I can use to support the peer mentors.

By the end of the day I have heard back from both mentors and have scheduled their meetings for next week.  I have also checked the case management system and am pleased to see that all the mentoring meetings for last week took place and I can see from the case notes the mentors have made that there were no issues that they are seeking my support with.

VOCAL’s Training Officer will be pleased that one of the mentoring clients is also interested in attending one of our stress management courses and that the mentor has booked them a place.

I draft a few notes for next weeks mentors team meeting and head home, happy in the knowledge that the work we do helps provide vital support to carers from someone who has walked in their shoes.

 

North by North West – travelling with dementia on the Isle of Lewis

This post was written by Andy Hyde from Upstream, an organisation which aims to bring people affected by dementia together with those providing mobility services, to share their experiences, insights and ideas to develop and deliver new training experiences for mobility service providers in Scotland. 

 

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It’s a bus shelter. No, seriously, it is.

It’s called a Four Winds shelter and when you see it standing in a wind-swept spot, in the middle of the Isle of Lewis, you begin to see why. No matter what direction the wind blows from (and it can really blow) you’ll find a sheltered spot somewhere in there.

Paula Brown, who was taking me on this tour of the Island’s more remote transport links, leads the Life Changes Trust Dementia Friendly Communities project at Stornoway’s arts hub An Lanntair.  Among many other things, they are using creative approaches and ‘…co-designing techniques for engaging with people living with dementia, their carers and the wider community’.  One of the related projects involves primary school children mapping and exploring their routes to school. Some visiting artists had recently travelled the island’s bus routes and they are currently developing art installations for these very bus shelters…

We had already visited Staran, a community interest company that provides all kinds of services locally including gardening and transport. They have an impressive fleet of minibuses and adapted vehicles. One of the volunteer drivers Ken was just off to the local care home, so he offered me a lift and we chatted about how Staran transport was increasingly being used to take older and disabled people to medical appointments as well as errands around town and social outings too.

At Blar Buidhe care home, just on the outskirts of town, Ken met his passengers and Paula introduced me to Peter the care home manager. Peter has a wealth of experience in keeping the residents active and connected with Island life. We talked about mobility in older age and the challenges of simply getting in and out of vehicles. We heard that the home’s minibus is a lifeline and in constant use – and yet, some aspects of adapted vehicles could be better. Those yellow strips showing the edges of steps might be a perceptual problem for some people with dementia. Perhaps a solid block of yellow might be better? Could minibus adaptation include design, creating a better environment to travel in? We weren’t sure…

I had a go on the wheelchair lift into the back of a bus … those yellow stripes again.

minibus adaptation

The Alzheimer Scotland resource centre in town was the next stop – this is where a group gathers regularly to share information, have a cup of tea and generally tap into local support. We had some lovely conversations and noticed a taxi or two pulling up outside. We briefly chatted with one of the drivers  – yes, they regularly drop off here but no, not aware of guidance on the needs of people travelling with dementia. We need to point them to the SDWG film...  (Travelling with Dementia).

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And now we were heading north and west of Stornoway, stopping at bus stops and taking pictures…

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Some of them are pretty remote and we were wondering – why no timetables? Not even a bus number in some cases. Somebody else had been wondering too…

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Back at Lanntair we chatted these things through with David Smart, the local council’s Transport Manager. Clearly it’s a challenge, keeping information updated across a large, remote region. We learned that local minibuses provide short, circular services from remote locations, connecting people with more major island bus routes. Some of these are demand-responsive – you call and book them, so there is no timetable.

David told us about the HI Trans Thistle Assistance card and the Ferry User-Group meetings. We talked about concessionary travel and wondered if a diagnosis of dementia leads to a travel concessionary card? The answer, it seems, is ‘it’s complicated’.  Alzheimer Scotland has useful advice on driving and dementia which has guidance on free bus travel ‘If you are 60 or over you will definitely qualify. If you are under 60, you might qualify – some local authorities include people with dementia and some don’t’.

There are clearly many aspects of Island travelling with dementia to explore. Many people and organisations play a role and we need to find ways of including them in our conversations. There’s also a vast amount of local knowledge for us to tap into and maybe a different, more personal side to travelling that we might not find in other areas – drivers and passengers often know each other.

So, head buzzing with thoughts and ideas we headed back to the airport and one last bus-stop.

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Thanks to Paula for a day of thought-provoking conversations and sights – it has got us thinking about the similarities and differences we might find as we explore travelling with dementia in different areas.

With thanks to Andy Hyde.

A day in the life of a peer mentor

This blog was written by Nicky Gavin, a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  VOCAL provide both one-to-one and group peer support to carers of people with dementia. This service is one of the Trust’s 13 funded dementia peer support and befriending projects.

MENTOR

Today, as I am looking after my granddaughter (which I do every Friday to allow my daughter-in-law to work), I find myself thinking about the past week.

I have been volunteering with VOCAL – Voice of Carers Across Lothian – for a year now and this has been my busiest week with them so far.

I had so much support from VOCAL when I was new to caring for my father, that I was really keen to give something back.  Then Jane Greenacre, who is VOCAL’s Assistant Director and peer mentor co-ordinator, approached me to get involved as a volunteer. We discussed a few roles and I did try working in the carers centre for a bit, which I enjoyed, but when the mentoring project was mentioned, I knew it would be better for me.

I learned so much caring for my Dad and consider myself a people person so it felt a good fit.  Going through the training programme, I grew more confident that peer mentoring was something I wanted to do as I would not be giving advice (which I don’t feel qualified to do – what was right for me and Dad might not be right for others), but telling my story, letting others take the things they want to from it, and sharing experiences.

Last week was particularly busy, as I am currently mentoring two different people and we also had a team meeting. On Wednesday, I had my final meeting with a person I have been mentoring for a while.  We met in the same quiet cafe we have used for our previous meetings and, at her request, our meeting focussed on my role as my Dad’s power of attorney, so I shared quite a lot about the practicalities of this but also how I felt doing it.

This is something I always try to do, as often my mentees have a good understanding of processes but find it difficult to use them due to the intense emotions involved.  Saying our goodbyes was quite difficult as I will not see her again, but I left feeling upbeat as she kindly thanked me for my time and told me that it had been really useful to talk to someone who has been though the same thing as she had – none of her friends had been carers before.

On Thursday I had a first meeting with a new mentee so we met in the Carers Centre (first meetings are always in the VOCAL offices). I got there a bit early to make sure I had the kettle boiled to ensure a warm welcome.  My new client was particularly interested in behavioural changes and how I coped with them.

When I talk about this, I always think back to my training and am mindful of identifying the learning from my story, the positives, and the things I would do differently.  It might not be too helpful to share all the struggles I had without providing some light at the end of the tunnel!

The meeting went well and I was pleased that said she would like to meet me again.  She had been unsure that we would have enough in common as she was caring for her husband, and I was a carer for my Dad, but she found it useful and we scheduled a meeting for two weeks time and she seemed to head off a little lighter than she came in.  A number of new clients have been concerned that my Dad’s dementia was different from their own experiences with a loved one.  That’s true, but what is common are some of the challenges that we face as families.

The team meeting was good as always. I like going to the Centre and catching up with the staff but the peer mentor team meetings are the only time I see the other mentors.

I like these meetings, as we really got on well as a group when we did our training, but also as it gives me a chance to learn from their work too. The meetings are quite structured by Hazel (the carers support worker who manages us) but she always allows us time to catch up as well and it gives us all time to reflect on how we do our work.

My mentoring journey has so far been really rewarding, and I am glad that it’s a journey I chose to embark on.

With thanks to Nicky Gavin, volunteer peer mentor with VOCAL (Voice of Carers Across Lothian)

Dementia Friendly Theatres

Creating enabling environments in historic buildings – the challenges and the benefits.

Inside theatre 2

Many of us love going to the theatre and the arts, but what happens when people who may have enjoyed theatre all their lives find themselves living with dementia? Our staff at the King’s and Festival Theatres in Edinburgh started to notice this happening. Friends of the theatre who had been avid supporters over many years suddenly stopped visiting. After contacting them it was discovered that they had had a diagnosis of dementia and no longer felt confident coming to see shows. So the theatres starting asking the question ‘Is there something that we can do so that people can still come to the theatre?’ As a result last year the Festival City Theatres Trust applied for Life Changes Trust funding and were awarded £320,000 over three years to explore how our venues could become dementia friendly communities.

‘What makes a theatre dementia friendly?’

Many venues around the UK are now offering dementia friendly events and shows as a part of their programme, adapting their procedures for these shows; putting up extra signage; having more frontline staff and/or volunteers working in key areas front of house and in the auditorium. Some venues now offer adapted dementia friendly performances of major touring productions as a part of their programming. We started to ask ourselves is this something we can do all the time? Could we adapt our venues and procedures and enable our buildings to be more accessible and user friendly 24/7?

Key to any of this work has been and will continue to be the inclusion of the voices of people living with dementia, their carers and our wider audience as well. We also took the decision to have our buildings audited by the DSDC to give us a clear indication of the task ahead. So over the course of two days last September Chief Architect Lesley Palmer from DSDC visited the Studio Theatre and the Festival Theatre. One of the main challenges here is the age of the buildings and their differing levels of accessibility. The Festival theatre was rebuilt in 1994 with its iconic open glass frontage while retaining the original Milburn Brothers 1928 auditorium. The Studio theatre opened in 2013 and is the most accessible of our buildings. Our sister venue The King’s Theatre is a grade A listed building and opened in 1906 and is the least accessible building with its own set of challenges. So for this article we’ll focus on the Festival Theatre.

Armed with our DSDC building audit we invited our first groups of people living with dementia for a walk around the Festival Theatre foyer spaces and corridors.  It became clear very quickly that it was the environment that was the disabling element in the equation. Not necessarily the person’s dementia. As we walked round and I was explaining some of what we were proposing to do, like improving signage one lady said, ‘so you’re just making it better for everyone then?’

The process of adapting our buildings for people living with dementia will ultimately make them friendlier and more supported environments for many more people. The comprehensive audit from DSDC identified seven key areas for adapting the Festival Theatre and three areas for the newer Studio Theatre.

The café at the Festival Theatre was already due for a refurbishment before the project began and was number seven on the audit hit list. Not a huge priority but it gave us a great opportunity to implement some of the findings from the audit before taking on the bigger chunks.

Theatre cafe 1

Here is the café as it was. There are lots of hard surfaces on the back and front of the bar which coupled with the slate flooring made the space very noisy even with just a few folk in and even more so with a sell-out show and 1915 people milling around the foyers. The lights were old fashioned directional spot lights that at night threw confusing shadows around the space and onto the tables and chairs. The tables were also quite reflective and the seating, with its grey seats and black backs which were contrasting in tone there wasn’t a  sufficient contrast between the chair seats and the black flooring for them to be as visible as they could be for people with dementia and also people with visual impairments.

The Director of Operations at the theatres, Brian Loudon, was able to liaise with appetite direct, the company who run the café, their designers and come up with a design that fulfilled the cafes desire to have a stylish environment for diners to enjoy their food and drink in and at the same time fulfilled our desire that the space should be as supportive as possible for a broad range of customers, but particularly those elements highlighted in the audit to support a more dementia friendly design.

Theatre cafe 2

The new space has improved lighting, wooden surfaces on the bars to help deaden the acoustics, along with drapes and a new sofa style seating area to extend the café capacity and provide a more social seating area that has proved very popular with wheelchair users and some of our larger consultation groups with the dementia friendly project. It is a much more accessible space and the confusing menu written on the back of the bar wall has gone and has been replaced by a large glass fridge so that you can see the food before making a decision what to eat.

As the project moves forward we will continue to work with our consultation groups on the implementation of the building audits and the group will now be assisting with the formal audit of the King’s Theatre this year. We want our theatres to be as welcoming and as supportive an environment as is possible for all our audiences. Not just our current audiences and for our future audiences as well.

Paul Hudson is the co-ordinator for Forget Me Not at the Festival & Kings Theatres.  

Paul Hudson

This project has been funded by the Life Changes Trust and is supporting the Festival & King’s Theatres in making Dementia Friendly Communities. This includes programming events and performances which are suitable for people living with dementia and their carer’s.

This blog first appeared on the Stirling University Dementia Centre website.