'Are you lost?'

I’m just back from a few days in Dublin, finding out about the work that’s being done to help people travel with hidden disabilities at the airport there and meeting up with some fellow EFID awardees at the Irish Dementia Working Group. 

With a little time to spare, I spent some time discovering the city, always on the look out for how local transport works.

The first thing I noticed was the road crossings - we are often told about crossings that don't allow enough time to cross or that change from green to red very quickly. In Dublin an amber person appears as we crossed the road  - I'm not sure if there's more time allowed but, if you were taking things a little more slowly, it might feel as though someone was on your side? I liked it.

I took a local train through the city centre. It’s a good, regular service.

At Connolly Station I noticed some staff helping people using wheelchairs board with a ramp so I asked them afterwards about assisted travel and if people needed to book.

Some do, they said, but they don’t need to, just let us know when you arrive and we’ll help you on to the train. Sounds good.

I headed outside to a bus station 5 minutes down the road and, with my toilets-on-a-journey hat on, took a look inside. As often happens (and we’ve talked about this in our project) people wonder why you’re lurking around the toilets, but not going inside.

This was friendly Dublin though, where local people make the first move to chat.

‘Are you lost?’ the woman asked me as I peered at the sign to the accessible toilet. No, I said, just wondering what facilities are available. She looked a bit unsure. She had been waiting outside for a while apparently and yes, she explained, there’s only one 'disabled' toilet.

I was just asking her about finding toilets along her journey (and she was starting to frown at me) when a sharp, loud beep started and a light flashed next to the door.  We both immediately thought the same thing - the person inside had pressed an alarm.

‘I hope they’re alright’ she said, looking worried.

‘Open the door!’ a voice shouted from behind us. It didn’t make sense.

And again ‘Open the door!’

We turned and someone in uniform was walking away from us. No explanation. The woman pulled on the door and it opened.

‘There’s nobody in here' she said. 

We exchanged a puzzled look - she had been waiting a while for an empty bathroom.

Clearly a little embarrassed and frustrated, she disappeared inside. I looked again at the notice, which I hadn’t read closely.

So, in order to use the 'disabled' toilet, you had to cross the station concourse about 100 meters away and ask. Or you had to be spotted - which clearly took a while.

At the information desk there’s a button that staff can use to open the toilet door. Maybe it’s the one that they use if someone does press the alarm?

‘It’s to stop everybody using it’ the staff explained when I made the trip across to ask.

At the time (even with my toilets-on-a-journey hat on) I didn’t think to stop and ask ‘how do you decide who gets to use it?’

Perhaps we should focus on systems that enable access, not restrict it. Something simple like a sign that tells us that the toilet is occupied would be helpful.

Later, when I met with the Irish Dementia Working Group, we had so much to discuss and share that I didn’t get time to tell this story, but we talked about the issues it raises. How sometimes the simple fixes can make the biggest difference ...  and the fact that we need to consider how services make us feel?  What about the person wanting - no, needing - to use the toilet. What’s the impact of this system on them? In this case, probably quite negative.

We covered so much over the course of the afternoon and it was a pleasure to spend some quality time together, sharing experiences, opinions and ideas. Yes, we talked about designs and environment and the challenges of travelling with dementia, but we also talked about the need for action, for improvement, for a different approach to design and for real change at a local level, not just more talking. Let's hope we can find ways to collaborate to make some of this happen.  

I don't have toilets-on-a-journey hat by the way, but maybe I should get one. 

So many stories

We've been talking toilets. Toilets and journeys.

Who knew there would be so many stories, so many views and so much energy in the room? Both rooms actually, at the Sports Village in Aberdeen and the Thistle Foundation in Edinburgh. 

Two groups of people representing a range of disabilities - dementia, spinal injuries, muscular dystrophy, learning disabilities and more - all sharing experiences and ideas. 

We considered what we already know and shared some stories. We talked about design and signage, sinks and taps, floors and lights. But importantly we talked about how the experience makes us feel too - when we have to ask for a code to simply get into the toilet or when the only option is to use a dirty floor to change our child.

It was important to witness these stories, to gather together as like-minded groups of people, supporting each other to talk openly about something that all of us, including you, need on a regular basis.  We were also designing the research methods together.

We haven't even started taking journeys yet but the groups had so many experiences and challenges to share: 

• finding the right change if you to have to pay
• the sensory impact of noisy hand dryers
• multiple, confusing tap designs
• no toilet roll
• difficult spaces to navigate, often with no exit sign

If these don't seem like a big deal, consider the additional pressures of navigating busy transport hubs (perhaps in a wheelchair), working out the different rules in different places, raised anxiety levels, buying the right ticket, getting to the bus on time... all when needing to use the toilet, and needing it now!

As ever, it’s always good to actually do something instead of just talking about it – so Mark and Tom came along from Scotland’s Urban Past  to give us some pointers on taking photos and recording our experiences. This was really valuable – we tried taking pictures of toilets at the venues and wrote down what we saw and how it made us feel. This will help us to design the method we all use on the research journeys. 

One participant noted that they noticed a strength in working and noticing together – we get so used to thinking of our own needs, it’s good to hear the needs and thoughts of others.

We need to describe the impact that unsuitable or inaccessible toilets have on our journeys. As Paula Sherriff MP said in Parliament recently, just putting the label 'accessible' on a toilet doesn’t mean it’s suitable.

So, what next? We have some people on board as co-researchers, keen to take journeys and record their experiences of finding and using toilets along the way.  More plans to make and then the journeys begin...

Where's the toilet?

We all know that some aspects of a journey can be difficult. Some can be uncomfortable. Some might just tip the balance and stop us travelling altogether. So, what would stop you taking a journey? What’s your travel dealbreaker?

Cost? Large crowds? Difficult connections?

How about access to a toilet?

Many people have told us that lack of access to appropriate toilets, their accessibility and design as well as poor signage (to find them AND to get out out!) can all present barriers to travel. If we can’t be sure that we can get to a toilet somewhere along our journey, we might think twice about setting out in the first place.  

Let's face it, going to the toilet is a universal human need but it's private so we rarely talk about the need for public toilets in debates about social inclusion. However, without access to toilets that meet our needs, many other efforts to promote social inclusion are likely to struggle to make an impact.

And if you're wanting to find a public toilet, the chances are you're on a journey, even if it's just a local one.

So I’m delighted that Go Upstream is going to be part of a research project looking into toilet provision on journeys, aiming to come up with some useful ideas for service providers to move toilet design and provision up the list of priorities. We just had our first planning meeting and it was a room full of expertise! The team includes:

Professor Heather Wilkinson, Director of the University of Edinburgh’s Centre for Research on the Experience of Dementia (ECRED).

Jenny Miller, Chief Executive of PAMIS (who support people living with multiple, complex disabilities) and champion for Changing Places toilets.

Mary Marshall, senior consultant at Dementia Centre, Hammond Care UK, Honorary Chair at ECRED, expert in designing for dementia and author of Toilet Talk. 

Agnes Houston who will bring her expertise, experience and energy, representing the Scottish Dementia Alumni.

But the wider team will include people with a range of disabilities, including people with dementia, working with us as co-researchers, gathering real-life examples of the challenges faced on journeys across Scotland and determining the top priorities and potential solutions for designing inclusive, accessible, and findable toilets. We’re hoping it will provide an opportunity to present a strong, united voice and a consensus on the common challenges, needs and priorities shared by people with different disabilities. Maybe we can develop a collective, creative way to work with service providers and equipment manufacturers.

The project is supported by a grant from Disability Research on Independent Living and Learning (DRILL) and in their press release, Dr Sally Witcher, Chief Executive Officer at Inclusion Scotland, said:

“We are delighted to see the important issue of toilets and transport join Scotland’s
fantastic portfolio of DRILL funded projects. Access to toilets is obviously a basic
requirement for anyone wishing to travel and is something that most people just
take for granted. However, the impact of not having access to toilets has a major
impact on disabled people’s freedom of movement and their ability to achieve
independent living. With decision-making, participation in public life, Self-Directed
Support, housing, autism and now toilet access as themes, DRILL continues to
support disabled people in Scotland to lead high quality research into the issues
which matter to us most.”

We’re planning our first gathering of people to design and begin the data gathering phase and we’ll talk more about that when it’s underway.

In the meantime, next time you’re on a journey and looking for a toilet en-route, consider how inclusive the experience is. Better still, share your story. 

European connections

What a fantastic opportunity. Two days of meeting, learning, connecting and reflecting. Importantly, two days of planning, looking at actions we can take together. 

The European Foundations' Initiative on Dementia (EFID), along with local organisers Foundation Compassion Alzheimer Bulgaria, hosted more than 60 people from around Europe, creating a space for a friendly, open and honest exchange of ideas. Along with people from this year's winning projects, we met and worked with many of the 20 previous winners. 

We discussed how we value the expertise of people living with dementia, how to scale-up activity across borders and how best to keep in touch and work together as a growing network. We also heard from a number of people living with dementia - Kathy Ryan from the Irish Dementia Working Group and Helen Rochford-Brennan from the European Working Group of People with Dementia provided some powerful personal experiences. Elena and Nico from Foton urged us to open our doors to each other, to connect as friends. 

Great facilitation kept us moving and working together and, as ever, important conversations happened over coffee, chance meetings and introductions.  

(Thanks to EFID for the photos)

And then it was the awards ceremony with much applause, celebration, a wonderful choir from a local residential home, an address from the Deputy Minister of Labour and Social Policy, more powerful and thought-provoking words from Helen, certificates, smiles and a glass of wine or two...

I'm sure that the conversations won't stop here and I’m looking forward to seeing how some of these new connections can become collaborations to help people living with dementia across Europe. 

Exploring Sofia

It's a snowy scene here in Sofia and there's a lot to explore before tomorrow's conference. So I've been out and about, unable to resist trying the local trams. At first glance they appear to be a little old and rickety, but actually ... it all works nicely and, from an accessibility point of view, the local system is joined up and has some enabling features.

For one thing you can buy a single card that works on trams, buses and the metro. No worrying about having the right change or knowing where to buy the ticket. The information is pretty good too - even the older trams have next-stop announcements. Some information stands at the stops not only show the tram line and the minutes until arrival but there are spoken announcements too (at least I think that's what it was!).

There was a slightly anxious moment when, at one stop which was in the middle of the road, some of us stepped off into a lane of traffic - but the cars had stopped. I assume that's the rule and they always do...

Buses, trams and the metro seem frequent and reliable even on a snowy Sunday. I'll be interested to hear over the next few days what the local view is on accessibility. In the meantime, more exploring to do...   

European Foundations’ Initiative on Dementia

There's always great value in working and learning with other organisations, so we're delighted to have been chosen as one of twelve projects to receive an award from the European Foundations’ Initiative on Dementia, a collaborative initiative between The Atlantic Philanthropies, Fondation Médéric Alzheimer, Robert Bosch Stiftung, the Genio Trust and the King Baudouin Foundation.

The award is part of its programme “Valuing the expertise of people living with dementia” acknowledging work that respects the autonomy, dignity and right to self-determination of people living with dementia, emphasising the importance of listening to the voice of people living with dementia to value their expertise.

This is great - not only because it recognises the value of the approach we're developing but also because I'll be meeting with, and learning, from other projects based in France, Germany, Hungary, Bulgaria, Norway, Italy, The Netherlands, Belgium and Ireland (along with our fellow UK awardees at the University of Salford). 

I'm very much hoping that we'll get to work with some of these partners and with people living with dementia in different countries, to take our ideas across borders and learn about, and maybe even tackle, transport and mobility challenges in different settings. 

I'll be heading to Sofia, Bulgaria this weekend for the conference and awards ceremony so hopefully we can start making some plans then - exciting times ahead!

Onwards - supporting retirement from driving

For many of us, driving is a big part of life. Think of those family trips, that first car. Passing our driving test is a cause for celebration. But what happens if and when the prospect of stopping driving becomes real? 

A recent Independent Age report surveyed over 2000 older drivers aged 70 and over in the West Midlands and it makes interesting reading. More than 80% say that having a car is important to them because they like the freedom of being able to go where they want, when they want. Almost half (44%) of drivers aged 70 and over report that they would feel like '...they’d lost part of their identity if they were not able to drive'. And while it's important to support people to drive as long for as they are able, 'It’s also vital that people who are no longer able to drive have access to information on the various options available for getting around without a car'.

These are issues that we've heard over the last year or so in Upstream workshops. People experiencing the sensory and cognitive challenges of dementia either need to stop driving or face the prospect in the near future and this can be a difficult and life changing transition with consequences that go far beyond the practicalities of driving. It’s an emotional experience that can lead to difficult conversations, confusing and inconsistent advice and, often, feelings of anger and a loss of control. We’ve also heard from people who can continue to drive but are unsure of the what lies ahead.

We began to wonder what if a service was available to support people through this difficult time? What would it look like and what support could it provide? 

We’ve got some initial ideas but we won’t know of course, until we ask people affected by dementia. 

So, over the last few months Upstream has been helping with a new project called Onwards, funded by the Life Changes Trust and led by Viaqqio, that is aiming to do just that. We’ve been asking people affected by dementia about the challenges of retiring from driving and what types of support that might help the process. We’ve been holding workshops across Scotland which have been fantastic and moving, upsetting and thought-provoking. We’ve talked about what driving means to us all and what the key challenges are when giving up or facing the prospect. 

We’re learning that:

- driving symbolises independence and freedom, the ability to travel where and when we want. Something that other transport options appear not to offer

- many people are advised to stop driving at the time of diagnosis and different medical professionals might be involved in the conversation along the way 

- there is sometimes little information about why the decision has been made or what to do next

- this is an issue that people want to talk about but find it difficult to. They want more information but don't know where to find it.

We’ve just returned to the groups to have conversations that will help us to understand what type of support a service could provide and how it will be delivered.

This project isn’t just about learning though, Viaqqio will be building a prototype service and testing it out in the coming year.  

It’s a great opportunity for Upstream to use our engagement methods to explore driving and to contribute to a service that could make a real and immediate difference to the lives of people living with dementia. We’ll let you know how we get on.

Gratitude

I was chatting with @charliemuss a few weeks ago about the real power of telling stories, particularly when it comes to illustrating what's really important to people.

We were at an event hosted by The ESP Group, at the National Assembly in Cardiff, no less, talking about the potential for making transport services and technology work for inclusion and wellbeing. It's an impressive venue and well worth a visit.

Anyhow, we were concluding that we should share more stories.

So here's mine.

The next day I turned up at Cardiff Queen Street Station without my ticket to Exeter, which is another story. Maybe I looked a little flustered. I was certainly a little behind schedule and only had a rough idea of what my journey entailed.

Two staff were at the ticket counter. While one searched for trains to Exeter the other peered over their shoulder and started suggesting alternatives. It would be better if you caught Train A and connected with Train B. This one means you won't have a long walk to the next train... between them they quickly worked out the smoothest and best value journey, checking with me as they went along. Would I like the itinerary printed out? How about a wallet to keep all the tickets together?

Yes please.

They made it clear which of the three tickets I needed first and, as I went through barrier, another member of staff smiled and asked if I was OK, did I know which platform I was heading for?

I sat on the platform, waiting for the train, feeling, well... looked after. It left me wondering about 'dementia-friendly' services and what it really means. This was was more than friendly.

Damian's post about The York Minds and Voices DEEP group describing Barnitts the hardware shop in York being the most ‘dementia friendly’ place in York was fresh in my mind. I know Barnitts and as Damian says, it's labyrinth, but staff know this and help people navigate it. 

If there is a hunger to properly serve customers, then customer facing staff everywhere will be actively watching and listening, picking up on small cues and making themselves more visible and approachable, knowing as everyone should that it is more often the situation that disables not the condition.   

I felt like I'd just experienced something similar. No sticker on the window, no certificate on the wall. Just good, caring, thoughtful and yes, enabling service. My own situation had worked against me that morning - and yet I was helped to feel confident and able to make the journey. The tickets were in one place, not jumbled in my pocket as usual. I had a printed itinerary that listed my trains and times - I normally try and hold this in my head. Those staff had picked up on my (maybe not so small) cues.

One of the themes that has emerged during our workshops with people affected by dementia has been gratitude. Some people look puzzled when I mention this but it's important. Good stuff often happens, we're thankful when it does but sometimes we don't have a chance to say thank you or explain why and how it made a difference. I'm sure I said thanks at the time but I was distracted and in a hurry. I spent the rest of the day feeling grateful to those who had made it a much better start to the day than it might have been. 

I often try to describe my thoughts on the value of, and the need for, turning dementia 'awareness' into a deeper understanding of what can practically help people to travel well. The small things that can make a difference - that remove barriers from taking a journey. In the future I'll use this experience as an example.    

I suspect it's happening around us all the time, we just need to be on the lookout, recognising truly enabling service when it happens and then sharing our stories. 

What's yours?

What does 'special assistance' mean?

When Upstream was just getting up and running, Stornoway airport was pretty much the first place I travelled to and through. So it’s always a pleasure to return, particularly as the staff there have taken an interest in understanding our work and clearly want to make a difference for passengers travelling with dementia.

We've run a couple of workshops over the year, small but productive, introducing the challenges of travelling with dementia. Ellie from Alzheimer Scotland has run a dementia friends session.

In the meantime, again with Ellie's support, we've worked with a number of people affected by dementia at the Bells Road Resource centre in town. 

Yesterday we brought the two together - a group of people affected by dementia and airport staff.

But first we'd started off at the Bells Road resource centre in the morning where our discussions focussed specifically on retiring from driving - we also touched on air travel in preparation for the afternoon. We came up with a list of questions that were mostly about passenger assistance:

• What does ‘special assistance’ mean? It is surely dependent upon a person’s needs.
• How does 'accompanied' travel work? One member of the group had not been accompanied for part of his journey …
• Do all staff know, particularly security staff, if someone has requested special assistance?
• Are there special fares for carers who might simply accompany a person and then return without ever leaving the destination airport?
• Can planes park closer to the terminal so that people don’t get so wet getting to the plane on a rainy day!?

We headed to the airport for lunch at the friendly Cafe and met with Georgie the memory nurse who was joining us for the meeting. It was great that five airport staff were able to join us for a chat in a quiet corner of the lounge - we had representatives from security, fire and airport information along with Duncan the airport manager. We brought up our questions which prompted a long chat about ‘Special Assistance’ which passengers can book ahead of their flight.

Lots of questions emerged around how this process doesn’t always work for people living with dementia since the focus appears to be on physical mobility. The information gathered at the time of booking doesn’t give people the opportunity to provide details of the support that they might need. Assistance is a very personal thing - it depends on me and my own needs and abilities. That will be different to the next person with the same condition. Booking Special Assistance appears to take a one-size-fits-all approach - of course, when staff are providing assistance, they endeavour to provide whatever support is required, where possible.

Things we learned:

• People accompanying passengers as far as the plane can get a visitor’s pass to go as far as the departure gate.
• Alzheimer Scotland Carers cards could be a useful, subtle indicator for staff to let them know that more than one person might need assistance and not to separate people at security
• Some issues that arose are the responsibility of the airlines, not the aiport - we need to make sure we have all the right people taking part in the conversation.
• Larger airports have ground-handling staff too - a wider group to include in the conversation
• There is a private security room which passengers can request to use - this might be helpful for some people travelling with dementia, providing more time, more privacy and less pressure.
• People living with autism have worked with the airport to develop a process that allows for easier boarding and hopefully a less stressful experience. This includes a storyboard of what happens at the airport and on the plane, created by the families. We really liked this idea.

As for getting wet, the pilot apparently decides where to park the plane depending on the wind speed. So, I wondered, why not provide umbrellas? The group gently pointed out that umbrellas and Stornoway wind speeds don’t mix well. Ellie smiled 'That’s a mainland question!’

And no, there's no way of all staff knowing that someone has requested assistance - at any airport, as far as we know. 

But there’s much enthusiasm for finding solutions and we hope to be working with Duncan and the team again very soon to look at language, navigation and the assistance process, along with people living with dementia.

Ellie and I took some time to reflect over a cup of tea back in the cafe and several staff who couldn’t be at the meeting dropped by to say hello, sorry they couldn't be there but how did it go? Stories were swapped, personal experience emerged. 

Dementia touches the lives of so many people we work with. Making space for inclusive conversations allows 'personal' and 'professional' lives to blur. When this happens, people can feel able to bring and blend their own experience and expertise of caring and running essential transport services into the discussion.

It’s powerful, sometimes emotional and we need to do it more. 

Alzheimer’s Society Dementia Friendly Transport event

It’s always good to know you’re on the right track, if you’ll forgive the pun. Not that we’ve ever had any doubt that mobility is a big issue and that we have to get transport right if we’re to enable people to continue to continue to live well with dementia. Having worked with and spoken with many people affected by dementia, we know it's important.

But recognition of its importance by transport operators, related organisations and Governments is key. When we organised our own event Travelling well with Dementia back in December it attracted around 70 people from across the UK which confirmed to us that there is definitely interest in making transport better.

Last week's Alzheimer’s Society dementia friendly transport event in London brought together more than 100 people from transport operators, support organisations, planners and other service providers. Opened by Alzheimer’s Society CEO Jeremy Hughes, chaired by Alzheimer’s Society ambassador Angela Rippon and featuring an address from Paul Maynard MP (Minister for Rail, Accessibility and HS2), the gathering showed that real momentum is growing around improving transport across the UK.

It was good to hear the Minister talk about public transport being a 'lifeline' for many people, particularly when they have to stop driving. It was interesting to hear this special mention of the 'fear and anxiety about people being told they can’t drive any more'. 

'Last year, just over 2,000 people referred to the mobility centres were advised to stop driving. But almost 5,000 more were supported to continue driving safely. And an increasing number of those will be people already living with dementia. So a diagnosis of dementia is not in itself a reason to stop driving.'

'... today 1 in 3 people with dementia are still able to drive safely.'

This was timely for us as we're currently in the early stages of talking with people affected by dementia about this very subject, curious about how they might be supported through this difficult and often anxious time.  

The Minister's speech was upbeat and optimistic - you can read it here. He also mentioned of a forthcoming revision of the Accessibility Action Plan. We must be sure to include input from people affected by dementia in response to this consultation. 

A group of people affected by dementia soon brought us back to the here-and-now with some real insights into travel challenges such as the challenges of noisy environments, poor information and staff unaware of the difficulties of travelling with dementia. It was all sounding very familiar.

When asked what their top request would be to make travel easier they cited better signage and staff who have a greater understanding of dementia.

Professor Roger Macket from UCL followed this, describing his research on travelling with hidden disabilities that shows how people with dementia lose confidence to travel and experience raised anxiety. Again, this was sounding very familiar - people affected by dementia across Scotland have told us this time and time again. 

Breakout groups focussed on different transport modes - air travel, rail and bus/taxi/community transport. I spoke about Upstream briefly in the bus workshop and we heard about some brilliant initiatives including ECT Charity who cited the importance of community transport in making journeys such as a visit to the hairdresser possible - fundamental in keeping people connected and independent. Southern Vectis (part of the Go Ahead group) talked about some their inter-generational work, taking buses to schools to do training around mobility and ageing for kids and drivers! Victoria from Brighton and Hove buses described their work, including a travel assistance card - they use the wording 'Please be patient if I'm confused' but it can be personalised. No branding, designed with the Alzheimers Society and people affected by dementia. Lots of interest in this, particularly as it could be used in any situation. 

The workshop highlighted that there is a lot happening that we just can’t seem to keep track of. Upstream can collect some of this info but we need to do more, much more, if we’re to work smartly together to make things happen.

A few final comments and questions from the audience included:

- how do we ensure that we design systems, services and products that are consistent across borders? people find it difficult to travel from one city to another but what about one country to another? Good question.  

- A representative from Dementia Action Alliance reinforced the point that involving people with dementia is key and that transport operators can team up with their local DAA to make useful connections - indeed and that's where we're trying to make difference too, by creating local conversations and connections between transport providers, support organisations and people affected by dementia.

The big message from the day seemed to be that staff training and awareness is a key part of the picture. Of course, this is exactly what Upstream is developing and so we’ll be delighted to participate in whatever way we can.

I came out of the event feeling optimistic. Lots of great new conversation had started. It was great to see such a wide range of activity south of the border - let’s continue to make the connections with work here in Scotland and elsewhere.

Happy Landings!

We talk a lot about the benefits of getting people together to talk about travel and transport. Operator staff learn new insights about travel challenges and potential solutions from people affected by dementia. Equally importantly, people affected by dementia report that they learn about the assistance that is already available to them, as well as having ideas about how things could be better.

Some talk about feeling more confident about travelling and using assistance services after having talked them through. So, it's great when we hear stories that show the positive outcomes that can follow from these encounters.

We've written before about the successful visit we had to Aberdeen Airport with Alzheimer Scotland's Positive Dementia Group back in March. While we were there we heard about Roy and Charlotte's forthcoming big trip and staff described and demonstrated assistance service that they could use to help their journey go a little smoother. We also walked through the check-in and security processes.

Having returned, Roy and Charlotte shared their experience on the Alzheimer Scotland (Aberdeen and Aberdeenshire) Facebook page and it looks like it was a happy one. 

"'When we booked our flights we told the travel agents that Roy had dementia. Telling them & then getting all the tips when we went to the airport that day was just great. We had no problems at all..."

"We would advise anyone that is travelling to ask for assistance. It certainly made a difference to Roy being able to go back to see the family & not be apprehensive about the journey. The other thing I would advise is if you do a long haul have a stopover & keep hydrated. It makes such a difference."

We're delighted that Charlotte and Roy had a good trip - and thanks to Kevin, Fraser and colleagues at the airport for providing those hints and tips that helped them on their way! 

Shinkansen!

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...

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!

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]

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.

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

An evening with the Dementia Friendly Japan Initiative

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.

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. 

Hello Kyoto!

Well, this is exciting!  After many hours in the air I’ve arrived in Japan where I’ll be for a week or so, talking about Upstream’s work at the Alzheimer Disease International conference here in Kyoto, along with a few other meetings that will aim to share ideas around travelling well with dementia. The conference is an annual event which attracts around 3000 delegates from over 100 countries so I’m looking forward to lots of good conversations about putting people affected by dementia at the heart of service redesign.

This is my first visit to Japan so it'll be interesting to see the similarities and differences in transport processes between here and the UK. 

Accessible air travel

Last summer we asked Aberdeen Airport if we could come along and talk about Upstream’s work. We thought we might get a few people together - a group of 25 or so interested staff turned up. There was clearly a lot of interest and Sarah from the local Alzheimer Scotland office was asked to come back to run several dementia friends sessions.

So, when airport staff invited people to visit as part of Disabled Access Day we were delighted that Alzheimer Scotland's Positive Dementia Group agreed to come along. We're keen to find ways to bring people affected by dementia together with mobility service provider staff and this was an excellent opportunity.

We caught the Jet Bus from the city centre to the airport which was a smooth journey although people noticed that the road layout had changed recently and the bus stopped in new, unknown places. We thought it would be good to have announcements to tell us where the bus was stopping and maybe how far we were away from the airport.

We were met with a warm welcome from Kevin and Fraser, airport duty managers, along with four of their colleagues - two from security, one from ground handling and an airport ambassador. After a chat, introductions and some stories about air travel we took a walk from check-in through security and on into the departure lounge.

Along the way we learned about the process, what happens behind the scenes, the assistance available and how to access it. We exchanged ideas and stories, heard about good and bad experiences and learned some good tips:

• If you’re having problems with online check in and you want to do this ahead of your flight you can come into the airport days before your flight to confirm and reserve seats

• There are assistance phones in the car park - call the terminal from there and someone will come and help with luggage, check in etc

• If you’ve requested assistance you can use the self check-in machines and then head straight for customer service desk to drop your bag and ‘check in’ to passenger assist.

• There’s an assistance point just beyond the check-in area with dedicated seats and staff on hand to help

• Airport ambassadors are available throughout the airport - just ask for help!

Going through security I experienced that anxiety of being separated from my belongings...albeit for a very short time. We learned that a person living with dementia can go through the the security detectors very closely followed by their companion - there’s no need to be separated. And then on through to the departure lounge to look at signage and check out the new seats set aside for people needing extra assistance.

Back in the meeting room we compared notes and thoughts. Everyone appeared to have learned something. People commented how good it was that we were sat around a table talking about the issues. Someone thought that, having learned more about the assistance available, maybe they would consider flying again. Others who were flying soon had learned about some extra help they could get. All very positive.

So what next? We’ll be interested to hear about the future flying experiences of the group and it would be great if we could do more collaborative work like this with more airport staff in Aberdeen and elsewhere. We want to facilitate more opportunities like this - bringing people together to consider travel challenges in a real context, experiencing services and learning together.

A huge thanks to Kevin, Fraser, Steph and other staff involved in such a positive experience for all. 

'My thoughts on continuing to travel'

Some great thoughts, ideas and insights from Wendy Mitchell

Travelling well ... but how?

Many travellers could benefit from some of the changes suggested when we talk about enabling people with dementia to travel well. We hear this a lot, but what could those changes be? What do we need to do to ensure that change can happen, that services respond to the challenges?  If what we're talking about is important, then what should we do about it, together? We thought we'd explore what some of those changes could be with participants at #upstream2016.

We split into groups to consider topics that can highlight real challenges for people affected by dementia: Planning a Journey, Giving up driving, Going on Holiday, Travelling to an event, Travelling to a hospital appointment, Buying a travel ticket... There are more but it was a start.

Each group had just 30 minutes to work through a process looking at 3 key questions:

WHAT?  

what does the discussion title mean to you? what might the challenges be when travelling with dementia?  

SO WHAT?  

why is it important? what's the cost of not exploring this?

WHAT NEXT?  

having named some of the aspects of the topic and why it's important to consider it, what might we do about it?

Of course, the topics we chose are incredibly broad and potentially complex. But then, that's what we're finding, travelling around can be a complicated affair and there are many players involved in making a journey happen. By viewing services from a different perspective - with someone travelling with dementia for example - we can begin to reveal and name some of those inconsistencies and difficulties that we all encounter, tolerate and adjust for.

So, what happened? 

Planning a journey

Planning a journey often requires gathering and analysing a lot of information. A significant challenge is to gather the right information from increasingly complicated and probably online sources. Different operators with different rules, multiple ticket options, peak vs off-peak, railcard vs entitlement card, two singles vs return... The group noted how difficult it could be and that's before setting off.

But this is important - without the confidence of knowing that a journey will work we might be less inclined to even try. Good planning can help to boost that confidence and put options in place to ensure that all will go as well as possible. We need to support people to decide to travel. 

So what should we do next? Providing information in different and better ways could help - station maps, not just signs. Using simple language. Developing a comprehensive inclusive design approach that works across operators? We learned a little about the Safe Places schemes which seems to be taking off in the Leeds area. A safe place helps '...vulnerable people if they feel scared or at risk while they are out and about in the community and need support right away'.

Could we look the benefits of creating more of these around Scotland? They might provide some assurance that if journeys go wrong there are safe spaces to seek out help.  

Someone reflected back on Wendy Mitchell's blog - Wendy plans by printing pictures to remind her (or using walking videos if possible). Can we think differently about how we provide information that can guide people around the community?  

Giving up driving

The discussion about giving up driving focussed on two phases of the experience: firstly, the process people go through when it becomes a possibility that they may need to stop driving and secondly, the impact that giving up driving can then have on someone’s life. The discussion highlighted the level of worry that people can face when they think that they may be forced to stop driving. This is largely driven by the perceptions people have about what their lives will be like if they can no longer drive. They may anticipate the lack of freedom a car can bring; worry about becoming isolated or being a burden on others; or have little experience of using alternative types of transport.

The group noted that there can be significant ongoing consequences if individuals: 1) delay how quickly they seek initial medical advice due to the fear of being told they will need to stop driving, or 2) continue to drive when it is not safe for them to do so. The role of formal driving assessment was seen to be a pivotal step in the experience of people with dementia. It was suggested that for some individuals it can currently be a frightening and very impersonal experience, but if re-imagined if could become a positive and informative process. More broadly, provision of information (e.g. about local transport alternatives), sharing of positive stories about transport (from other people with dementia), delivery of personalised support, and advancements to existing transport services were all seen to be actions that could improve the experience for people going through the transition of giving up driving.
        

Going on Holiday

This is a broad one. From choosing an appropriate destination to coping with another language and everything in between. Unfamiliar environments and potentially complex travel bookings can be daunting.

And yet, this is so important. The favourite quote from the discussion was ' "Come apart and rest a while, or you will come apart” – but you need to get to the destination in one piece!'

Visiting family, friends and places is a key part of our wellbeing. Somebody raised the importance of travel memories - sometimes brought back by travelling again. And, as pointed out in the subsequent conference session, it's good financially for businesses to ensure that trips and places are accessible to people living with dementia.   

So what to do about it? There was some talk about groups travelling together to look out for each other - perhaps a travel service so that people with dementia who need assistance can travel together in a group with carers. Maybe people living with dementia can help travel companies who book a range of services beyond transport (accommodation, visits etc) to understand the broader challenges.

Perhaps there's a role for Upstream to coordinate this. We've already talked with services such as Mind for You who provide supported holidays and heard that the travel experience to a destination can make or break a holiday. Removing barriers to getting away could encourage people living with dementia and their friends and family to contemplate planning a holiday...   

Buying a travel ticket

This discussion was centred around train and bus travel. Tickets are important ‘gateways to travel’ - people wouldn’t be going anywhere without a ticket and this can impact on quality of life.

The group thought that buying a ticket could be very complex, particularly when using ticket machines. Different pricing around peak times and discount cards can make this difficult for people with dementia and there was also anxiety around being seen as ‘cheating’ if boarding a train without a ticket – a problem for those travelling from unmanned stations.

There was some discussion about bus travel – examples such as the challenge of having to have the correct change for a journey in Edinburgh. The group also discussed the greater complexity of buying tickets for holidays and air travel. Ensuring that people with dementia are included in discussions with ticket service providers will be key. 

Going to a hospital appointment

This discussion raised challenges such as transport times close to appointments, cost, anxiety, being unsure of return journey details and the need for information and help in the hospital. What if my appointment's late?  All these points are critical in the decision on whether to get help to go to the appointment or even attend it at all!

So why is this important?  Attending healthcare appointments is essential and everyone should be able to go to hospital in a safe and easy way. The anxiety that can be caused by attending appointments is devastating to some and we've already seen calls for solutions to reducing this anxiety in North Wales. People will benefit from easier travel to and from hospital, not only through retaining independence but also through reduced anxiety and simply better wellbeing. There could also be cost savings for the NHS in reduced missed appointments, higher levels of wellbeing well and potentially reduced waiting lists and costs.

And what’s next?  The big theme in the group was ‘let’s work together’. Transport operators, local authorities, hospitals and dementia friendly communities.  Can we resolve these challenges with local solutions, volunteers and safe locations?  Helping each other, training for staff and feeling safe enough to ask for help. Can we create informal networks in our communities and use that as part of a larger partnership solution?

So, lots of questions, but can we work together to create a solution?

@cohesionnews heard this in their discussions too -  the challenge of partnership working. How do we enable the wide range of companies, public services, community organisations and small businesses involved in travel and transport to work collaboratively towards better mobility? If we want to make change happen, to create truly enabling services that remove barriers to mobility, this is something we'll need to work on. 

Maybe Upstream can play a role by bringing partners together and providing a space to develop a shared understanding of why travelling well with dementia is such an important focus. Maybe travelling well is the central theme, the glue that brings together the many and disparate players that need to be involved if we are to improve some of these life events for people living with dementia  -  going on holiday, watching a performance, attending a hospital appointment, giving up driving... 

Thanks to the Viaqqio team and Dr Sara Tilley who facilitated and provided notes on what happened in these discussions.   

Travelling well with dementia

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...

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 experience 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.          

Shared Journeys

A few months ago we learned about supported journeys - developed by the British Transport Police, working with train operator staff to accompany people living with dementia and their carers on journeys, helping to increase their confidence to travel. We really liked this concept and were keen to incorporate it into our work somehow. We've also been playing with a number of other ideas recently and wondered if some of the dots might start to connect ...

• We want to develop new types of training for operators that can help staff to better understand the challenges of travelling with dementia.

• We would like to somehow involve people with dementia in developing and delivering that training

• when bringing transport service providers together with people living with dementia we have noticed a two-way learning process - culturing a shared understanding of the challenges that we all face in using or providing transport might help to frame discussions about how services could develop in the future.

• we need to start talking more about why we travel - it's rarely for the sake of it. While travel can be an experience in itself, it almost always leads to an activity. People living with dementia are likely to experience a shrinking world. Visiting destinations and taking part in activities play a big part in motivating us to travel but people are likely to stop - not because they don't want to but because transport becomes too much of a challenge. Highlighting destinations and activities, along with the travel assistance that is available, are all aspects of talking about the importance of travelling well with dementia.

Could we combine the idea of an accompanied journey with developing a chance for everyone involved to learn something about travelling with dementia - and travel to a destination with an activity?

So, when the Edinburgh Festival Theatre announced a dementia-friendly performance of Chitty Chitty Bang Bang we began to wonder….what if we organised an accompanied trip to the theatre?

The great thing about being part of the Life Changes Trust network is the collaboration between its projects and related organisations. We're already working with Dementia Friendly East Lothian and through this we were introduced to the Dementia Friendly Dunbar support group . The Edinburgh Festival Theatre and their Forget Me Not project which was hosting the performance, was hugely supportive and helped with tickets and arrangements.

In the meantime we had been talking with Virgin Trains East Coast at Waverley Station about running some trial workshops about travelling with dementia. We described the shared journey idea and they generously offered to provide travel and support for the Dunbar group and some training time with the station mobility teams. In addition to this, the staff from the Age Scotland Early Stage Dementia project offered to help with providing dementia awareness training during our workshops.

So, the idea of a Shared Journey was born:

• A series of workshops, preparing operator staff by learning about dementia and considering their services from the point of view of travelling with dementia
• a group of people with affected by dementia travelling on an accompanied journey, hopefully learning about assistance available while providing operator staff a chance to experience and discuss the challenges of travelling with dementia directly with them - hopefully putting theory (workshop discussions) into practice (travelling together).
• Ultimately travelling to an activity, providing an experience that is enjoyable as well as useful

So what happened?

During late September and early October I visited the Dunbar group a number of times where we got to know each other, talked about travelling and started to plan for the day - how people will get to Dunbar station? what time we’ll need to meet? what information will people need? And then what will we do at Waverley station? How will we get to the Theatre?  

It turned out that a few people felt that the day might be too long to do the whole trip and so we planned for them to travel to Waverley, tour the station and then return home.

The Workshops

Meanwhile the workshops at Waverley Station were going well. During each one, we started with some dementia facts and figures, thanks to the Age Scotland team. We watched videos including Tommy’s powerful description of taking the bus. We shared what we’ve learned so far in Upstream and, based on what we’d learned and discussed together, we considered the station environment from the point of view of travelling with dementia. We walked the station together, observing different areas including the travel centre, the escalators, ticket barriers, information point and more. Some useful discussions emerged - the lack of signage, too much signage, the noise, the confusing names we give to things, inconsistencies in design and processes, the pace of moving around the station, environmental design, the information that is collected when booking passenger assistance and much more ... 

We talked about potential solutions - quick wins and longer term design issues. We weren’t going to solve anything there and then but we were seeing the service through a new lens and maybe this is a role that Upstream can play. By giving staff some key points to consider, informed by our discussions with people with dementia, backed up by some facts about signs and symptoms, we began to think about dementia-friendly solutions. Some were simply passenger-friendly, some were specific to people living with dementia. Some of them were existing ideas that could be spread further. All of them were informed by a mixture of experience and ideas from both operator staff and people living with dementia.

Finally in each session we talked about the Shared Journey - what we might do at Waverley? what we should show the group? how we would get from Waverley to the theatre and back? 

The journey

So, having planned the day with station staff, Virgin trains, the Festival Theatre, people living with dementia and latterly Hee Haw who would be recording our day, we just needed everything to slot into place. And pretty much everything did...

There was a slight sense of excitement and anticipation as people began to arrive at Dunbar station on the morning of the trip. We caught the Edinburgh train together, accompanied by Michelle from Virgin Trains East Coast, who had helped us to organise the day in so many ways. What struck me immediately was the chat on the train. Maybe it was the excitement of the day or the travelling itself. We gazed at the scenery, spotted places and people and talked of journeys and adventures. One couple had travelled extensively in the past but hadn’t travelled together for a number of years.

At Waverley we were met by passenger assist staff, organising ramps, offering a buggy to get around and helping us to the Virgin Trains lounge. We sat and chatted over coffee - we talked about tickets, considered the the process of booking assistance and discussed the various ways to travel through the station that are quieter and less busy. We walked together to see the assistance call point, the quieter taxi rank with the sheltered pick-up point and the various lifts that make it so much easier to get around a big station.

And then it was off to the theatre and a relaxed lunch in the cafe. Some of the group found a quiet corner for a chat with Michael and Johnny on camera and then we joined the hundreds of people arriving for the dementia-friendly performance of Chitty Chitty Bang Bang!

The feeling of excitement in the auditorium was infectious. With everyone settled into their seats I thought I’d stay until curtain up but caught myself staying for a few minutes… and then a few minutes more…

It was fantastic. I didn’t get to watch it all, but I have it on good authority that it was a wonderful performance. Brighter lighting, lower sound levels, a relaxed attitude to moving around and leaving the auditorium, the option to watch it on the screen in the cafe, wonderfully helpful staff … it all added to a feeling of flexibility and accessibility.

After bumping into the cast on the way out we headed back to the station and then Michelle accompanied us back to Dunbar.

It was a long day but the chat on the train suggested it all went well and people had enjoyed themselves - and had maybe learned with and from each other.

The plan is to get everyone together again in the near future to review how it went - what did we learn? what we could do differently in the future? Perhaps even some discussion around potential changes to services.

We're looking to develop models for experiences like this - participative processes where people affected by dementia not only learn about the assistance that is available but are also active partners in reviewing and redesigning services, helping operators to understand how their services could be different by working directly with passengers. It's a new type of training and we hope that shared journeys might be developed in the future - on trains further afield, but also on other transport modes. 

If you're interested in learning more or getting involved please get in touch.  

Dementia-friendly stations

The Upstream team are very fond of York Station having travelled to, from and through it many times over the years. So when we started the project we were delighted to learn that York had become the first dementia friendly station.

On the way to the ESP Westminster event I had the pleasure of breaking the journey and meeting PC Fiona Andrews, a British Transport Police (BTP) officer based in York. Fiona has been involved in local work to make rail travel more dementia-friendly that is now spreading far and wide around the BTP network. It all started with an increasing number of people needing assistance at the station... 

"Rail staff at York station highlighted that they were struggling to deal with persons they came across at the station who had dementia; they mentioned that, when called, BTP didn’t quite know what to do either. I went to our local Alzheimers Society to see if they could give us any help but, whilst liaising with them, discovered that there were many of their members, who lived in York who wanted access to the railway but had lost their confidence, both in coming to the station and also travelling by train. We just all realised that we didn’t really understand very much about dementia...'

Fiona began to think about the role that the BTP could play in supporting people to travel. 

People were losing their confidence to travel and Fiona wondered if a 'supported' journey - a day out to Harrogate on the train - might help to re-acquaint them with getting out and about. It was a great success - people with dementia and their carers reported afterwards that they would be more likely to use the train again having had that experience.  

"All of the persons who have travelled with us on our journeys have said that they would never have had the confidence to do so had they not done so in a supportive group. Travelling by train is also very reminiscent – I’ve travelled with persons who have struggled to speak yet will recount memories of train journeys they took as a child to the seaside or trips out with family. The person caring for the person with dementia found the journey liberating, many saying that it gave them a new level of independence, a new way to get about without having to rely on others".

Interestingly, the experience also helped staff to see their service and role from a different perspective .

It hasn't stopped there though. The word is spreading throughout the rail and police networks and now Fiona is spending much of her time helping other areas to provide similar support, including providing other supported journeys and developing some national guidance for dementia-friendly public transport.

"If there is such a high demand for persons needing to use the railway network in York then how many others over the country are being denied access to train travel? I decided to ask the Alzheimers Society to help write up a charter for dementia friendly railways and they agreed – they decided to use the ‘York model’ as the basis for the charter and then adapt it so that it covers all public transport. This charter has just been tested during its pilot phase in the York and North East region and will be then rolled out as the charter for all public transport for all of the UK.
The railway companies really want to develop their dementia friendly approach and to encourage persons living with dementia to use their services – for us as police officers we need to be able to make sure that when persons who have dementia and their carers travel they are supported and kept safe"

We're very much hoping that we can help to bring this approach to Scotland. 

Take a look at this video and hear Fiona and her colleagues describe the work in their own words...