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


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


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

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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...

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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...




Making connections


For all its downsides, Twitter is a great medium for instant connection and sharing. Before last Thursday I hadn't heard about Tommy Dunne's work in Liverpool. But after the #DiverseAlz chat on twitter about transport and dementia I knew a lot more, had chatted with him by email and seen this wonderful video he'd helped to make.

If you've ever been part of a tweet chat you'll know that sometimes it goes a little out of synch, people join, others leave ... some of us are still talking about question 2 when the conversation has moved onto question 4 etc... but it can surface useful insights and, as I say, make great connections.

I've looked back at the chat and gathered some of the tweets using Storify so you can see the timeline and the various points that were made.  The key message that I took from the discussion was that, not surprisingly, barriers to transport are a real issue for people living with dementia:

  • if a person has been used to travelling alone then barriers to transport can be be a 'tremendous sense of loss of control over own life'
  • lack of transport can mean a loss of freedom, lack of choice and social isolation
  • not being able to access groups and organisations
  • people living in rural areas are particularly affected
  • unreliable public transport can affect attending appointments and taxis are seen as an expensive option
  • even on the New York subway there are many inaccessible stations which demands a lot of route planning 
  • practicalities such as poor signage, unclear announcements and door timers can make travel difficult 
  • difficulties arise when moving from one transport mode to another
  • losing a driving licence is a big, emotional issue.

Tommy's contributions particularly struck a note with me as he was talking about the importance of training beyond awareness and here he talks about improving the experience of travelling.   

This is what Upstream is aiming to do - yes, raise awareness with transport operators but, more importantly, explore with them how the travel experience can be improved by working with people living with dementia.   



Making Gatwick Airport dementia-friendly

The Civil Aviation Authority is currently consulting on guidance around the need to provide assistance for people with hidden disabilities, where '...Hidden disabilities include, but are not limited to, dementia, autism, learning disabilities, anxiety issues, mental health impairments and hearing loss'.   

And we're hearing quite a bit about air travel in our workshops. From the difficulties of hearing announcements on the plane to the stresses of the security process. So, it was interesting to learn that Gatwick Airport had recently launched a new initiative during Dementia Awareness Week - a lanyard for passengers with hidden disabilities who may require additional support when travelling through the airport.

Passenger Assistance at Gatwick is provided by OCS who help passengers with reduced mobility with services such as wheelchair access, flight transfers and more. I met with Ruth Rabet and Sam Berry at the Gatwick OCS office recently and learned about the work they are doing to help people with hidden disabilities.

If you've ever travelled through London Gatwick you'll know just how big it is. The numbers are staggering - airlines fly from there to more than 220 destinations in 80 countries, carrying 41 million passengers a year. Over 20,000 people work on site. Like many international airports, it houses a complex combination of transport services along with retail, food and many other aspects of air travel. 

So, how do you go about introducing dementia-friendly initiatives in such a high-pressured and complex environment?  

Working closely with the Alzheimers Society, the National Autistic Society and others, Ruth and Sam have been developing ideas such as orientation visits to allow people to become familiar with airport surroundings and procedures before they fly. They are also delivering Dementia Friends training to staff across the airport and during Dementia Awareness week some of this was carried out in public spaces, raising awareness even further.


The idea of a lanyard was developed when thinking about the constant rush of air travel, with little time to stop and pause. Travellers with hidden disabilities, including dementia, can benefit from some simple changes to the routine - a little more time to answer questions or not being separated from companions or possessions. Having the option to wear lanyard might provide a subtle sign that a person might look for extra help.

Launched in Dementia Awareness week, they have proved popular. Customers can collect the lanyards at assistance desks in both terminals - around 600 have been issued since the launch and over 500 posted out to customers who have contacted OCS, requesting them prior to their travel.

And there are plans to try different formats. Pin badges and ribbons will be available very shortly and there are plans for rolling these ideas out across other airports that OCS operate from.



Preparing for the Future of Transport

Exciting times for Upstream - it was one of the projects featured at an ESP Group event on 'Preparing for the future of transport' in the Houses of Parliament. That's Steve there, talking guests through the various items on the agenda which included Car Freedom, a service which aims to make mobility better for over 60s. 

It was a good opportunity to talk a little about Upstream but also to see how our work fits with other initiatives that are looking at how travel and transport need to be designed with people's needs in mind. Car Freedom certainly addresses one of the issues that we hear about at almost every workshop - the need to support the difficult transition of giving up driving.

The event also saw the launch of the ESP Group's Easy Travel Index which gathered the views of 3,331 people in 33 UK cities to better understand attitudes to transport and '...get an insight into how people believe transport will evolve in the future.'

Interesting to see that one of the headline figures is that 30% of people worry about getting lost when travelling. Having got on the wrong tube to get to the event, I could begin to understand. It's also something we hear in our workshops - the complexity of finding our way, the consequences of poor signage and the anxiety of being separated from a companion. 

More than memory

Yesterday's event was the second Life Changes Trust gathering I've been to and it was another day of energetic discussion and making connections. One of the many great conversations was with Agnes Houston who has been living with dementia for over nine years. Among many other achievements, Agnes has recently gathered and published experiences of people living with dementia, describing the changes to their hearing and their sense of touch and smell in their own words. Speaking from her own experience, Agnes writes 'I expected the memory issues but when I started to have sensory challenges I did not know what was going on'. 

This booklet highlights some of the issues that we are also hearing about during our discussions. Sensory changes can make travel even more challenging and some of the quotes that Agnes has gathered during the research for this booklet are key for those thinking about designing mobility services, as are some of the hints and tips:

"In noisy environments I just can't brain shuts down..."

"difficulty processing what I see... stairs, light, black on black, glass doors"

Agnes has been appointed a Churchill Fellow for 2016 which will allow her to carry on this work further afield and we're looking forward to hearing her findings.  

Being there

The focus for Upstream is to work with, and learn from, people affected by dementia. We know that creating a space and some time to allow people to talk about what's important in their lives can be a rewarding experience - hopefully for everyone involved.  So, we're developing tools and formats for gently guided conversations about travel and transport - and hopefully capturing some of the stories and insights that arise along the way. 

And we're pleased with how it's going so far. We're trying different approaches and tweaking ideas along the way and, while we never really know quite how a session is going to unfold, we always come away from a workshop with more insights, thoughts and ideas. 

The thing is, we can show you the pictures that were drawn and the comments that were written, but to get a real sense of what's important, of what really matters, you have to be there. And if you had been there yesterday, in Aberdeen, you would have heard the stories, the laughter and the banter and you would have experienced the care and support that people affected by dementia were showing each other.  

We've also been planning to invite people from the transport industry into these conversations although we thought it might take a while for this to happen. But luckily, thanks to local relationships already being built by ACVO and Alzheimer Scotland, we were joined yesterday by David from First Aberdeen. He was soon inundated with questions and thoughts and ideas - but in a good way! He reflected afterwards that sometimes the small things can make the biggest difference. He also wondered about who he could bring back with him next time - it's important for other colleagues to be part of the conversation. Of course, he could take the notes and questions back with him, but to really get a sense of what's important, you had to be there.

This is an important part of the Upstream approach - not to necessarily find 'solutions', but to create opportunities for inclusive, friendly conversations that allow challenges to be described, ideas to be exchanged, new ways of thinking to emerge and then to mull it all over together with some tea and cake.

This isn't about creating a list of things to fix, it's about building a shared understanding of what it's like to travel with dementia and how we might work together to make things better.  We're only going to do that if we take the time to be there, to sit down and talk it through - together.  


Maps, pictures and more stories

Alzheimer Scotland's Solas Day centre in Stornoway provides a place for people with dementia to meet and socialise. Steve and I were offered the chance to talk about travelling and transport with a group there during our visit earlier this week and we were met with a warm welcome.

This session was a little different - many of those we met haven't used public transport for a while. However, the conversations were still valuable and hopefully an enjoyable experience for the group. It got us thinking about the processes we use and the activities we might develop for future groups. There was a lot of reminiscence happening so we talked about transport that people used to use.

Local bus companies came up a lot and Paula drew a bus as people described it - the colours, the distinctive shape, where people sat. We talked about how people knew which route the bus took because of its colour...

And we talked about the differences today. It's busier and noisier. Somebody mentioned that they are usually driven places these days - it's convenient and comfortable but actually they miss the chat and hearing the news from friends . We've heard this before - there's community on a bus.

We also heard some amazing stories from childhood - of people knitting while walking while carrying creels of peat...

We didn't draw our journeys very much - but there were some lovely pictures of things we'd seen on our travels and great conversations and laughter around the stories they provoked.

We looked at a map together and some of the group enjoyed pointing out where they had come from that day or, indeed, where they had grown up or gone to school. Steve observed how the transport-related pictures we took along really helped to start a discussion or reinforce a point. 

Printed pictures are tactile and colourful. Those of us that are leading more digital lives have many, many pictures locked away on laptops and mobile devices but printing them out means that we easily can pass them to each other and share stories around them.  We'll be thinking more about how we use these in the future ... or, indeed, how we tap into resources such as the historical society magazine we spotted last time or collections such as 'Lewis & Harris buses in days gone by'...

It was a pleasure to spend some time at the Solas Centre. As ever, having enjoyable conversations with people about their lives and their travelling experiences, now and in the past, can provide new insights, reinforce existing thoughts and spark ideas for us. 

As importantly, it feels like a meaningful and enjoyable activity for everyone involved.

Flying upstream

It's a relief to walk beyond the hustle and bustle of the shops and cafes, past the long queues to flights south and into the quiet zone that is gate twenty something at Edinburgh Airport. Particularly at 6a.m.

Steve and I were on the early flight to Stornaway for a day of Upstream meetings and a workshop.

It was a great start to the day - sunshine, fluffy clouds and then coffee and bacon rolls when we landed. 

Our first meeting of the day was with some of the Stornoway Airport team - the airport fire manager, cafe staff, a security officer, facilities management and an airline representative.

Paula describes our discussions nicely - we did a simple exercise of drawing something to describe our own journeys that morning. We heard about last minute changes to plans, driving instead of walking and the fact that there were no deer on the road! Paula talked about hailstorms on the west side of the island which then rattled at the windows about 5 minutes later. 

We explored travelling with dementia in general and together considered the challenges that the complexity of air travel might pose ... the rushing, the potential confusion of self-service check-in, security requirements... 

Flying can play a large part in the health and wellbeing of island life. Telehealth has a role to play, but people still need to visit clinics throughout the islands. We heard about people visiting from other islands to attend hospital appointments and older people flying, perhaps for the first time.  It all highlighted the many and varied, interconnected processes the lie behind air travel and the role that everyone can play in making it a dementia friendly experience. It also revealed how a caring attitude is already built into customer service. The team described how they look out for passengers that need assistance and work together to support them. 

It was a short introduction to thinking about dementia and air travel but it got us all wondering. A local group has worked closely with airport staff to help people with autism to prepare for a flight. A lot of thought had gone into improving the experience - from walking through the security process to trying out boarding the plane.

What can we learn from this? What sort of training might help to create something similar for people with dementia? 

"There's community on a bus..."

I was lucky enough to be a guest at a Dementia Circle gathering yesterday. Hosted in the Alzheimer Scotland Resource Centre in Ayr, Dementia Circle is coordinated by designer Jeni Lennox and aims to 'find, test and share everyday products that can help people with Dementia stay independent for longer in their own homes.' The group considers products together, discusses why they might be helpful, recommends other products and generally acts as a great local resource for practical ideas and advice.

Jeni kindly said that we could use one of the meetings to talk about travel and transport and what a great session we had. Two groups, many insights, lovely conversation and a lot of laughter. I had a coffee in the specially-commissioned Dementia Circle two-handled mug (much more steady to use, easier to pass to others with hot drinks in)

We drew our journeys to the Resource Centre, discussed the highs and lows and collected some thoughts on what's good and what could be better.

The chat was fascinating - here are just a few of the talking points:

Someone had walked to the Centre but, on reflection, hadn't spoken to anyone on the way. "Everyone was in their car". We talked about how some transport can be a social space - "there's community on a bus"

Much of the local travel is by bus - people felt more 'visible' on a bus. We have to interact with the driver getting on and off and there's a feeling of safety about this. Trains feel a little more anonymous...

Arriving at and leaving bus stops is a common problem - buses pulling away when people are still finding their seat... and why does there always seem to be a big puddle to step into when getting off the bus?!

Bookable services such as MyBus are good although sometimes there's a wait because of demand. 

Yes, concessionary and assistance cards are good, but there are a growing number - can't we just combine them in some way?

Those electronic buttons on trains that open and close doors - they can sometimes be confusing. And is the toilet door really locked? Really?!

We also talked about buses that unexpectedly take different routes, the uncertainty of the rules of using 'blue badges' to park and the anxiety that can be caused by waiting for a bus, now knowing when it will arrive.  

A big theme was uncertainty and the comfort of familiarity. Journeys can be filled with unexpected events and confusing information. We talked a little about timetables - some use the 12 hour clock, some the 24 hour clock. Live bus information that isn't quite as 'live' as we thought...

To finish off the session we did a little prototyping. A few weeks ago in Haddington we had talked about the confusion around tickets and somebody had wondered... Imagine if the outward and return tickets were colour coded. Wouldn't that make things easier?  So, we created some different coloured 'tickets' to explore the idea...

...and the general feeling was yes, it could help. In fact it could help everyone!  And what if we could choose other aspects of what our tickets looked like? Could we choose symbols or pictures that mean something to us? 

I was pondering this just as I headed through Ayr station to catch the train home - but the barrier thing wouldn't open. I'd put the wrong ticket in. 

North by North West

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, 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 ' 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.

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...   

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

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...

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.

Thanks to Paula for a day of though-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.       

Working with Dementia Friendly East Lothian

When we started off the project we said we'd be working 'across Scotland' and these first few weeks have been spent talking to groups that we might work with on a regular basis to learn more about travelling with dementia in different locations.

We've had some great conversations and ideas are blossoming (far) north of Edinburgh, but more to follow on that later. Yesterday Steve and I headed east to Haddington to meet the good folk involved in Dementia Friendly East Lothian, a growing network of activities and organisations across the area.

Upstream is going to be part of this exciting movement, working with Sue Northrop.  If you don't know Sue, her Twitter bio 'Woman on a mission to make the world a better place, starting with making Scotland a great place to grow old' is a pretty accurate summary!  We're very lucky to have Sue's support and through her incredible network we've already made some fantastic connections. 

We were invited along to The DFEL learning event yesterday to try out some workshop ideas and learn from an amazing gathering of people living with dementia, their carers, professionals, related organisations and support groups.

Professor James Mitchell chaired the event along with Sue and we heard stories of dementia friendly activity from the various towns across the region.  Most of the day was spent in conversation though, working in groups to look at issues such as discovering local activities and support, developing ideas for an area-wide plan and, in our case, looking at getting around East Lothian.

It was great having some dedicated time to talk transport in a friendly and creative environment. We asked people to introduce themselves to each other using travel as a conversation starter...

We asked them to describe their journey to the conference that morning and they became very artistic...

And then we asked them to have a think about what's good and what could be better ....


... and they came up with lots of interesting thoughts including:

I wonder why...

  • bus companies have to change routes - unfamiliar routes can be confusing
  • the printing is not larger on tickets
  • the signage is not better

Imagine if...

  • everyone smiled
  • someone was there to guide people
  • outgoing and return (tickets) were colour coded

This was a first go, so perhaps we'll tweak the questions and presentation in the future but it was great to have such enthusiastic conversations and some ideas to ponder. Thanks to everyone that came along and helped on the day - we're looking forward to working much more with you soon.  


And we're off...

Upstream is Go! and we're delighted to be diving into the project after developing ideas and possibilities with the Life Changes Trust.

Getting around and staying connected with our community is such an important part of staying as well as possible when living with dementia. We think of transport as a crucial community glue yet it sometimes falls short of what we need, particularly when facing the challenges that long term health conditions can bring.

Our goal is to work with people affected by dementia to explore the challenges it brings to travelling around and, ultimately, to influence the development of dementia-friendly services through sharing the insights we learn and by creating training experiences. We want to help people who provide mobility services to understand the needs of a growing number of their customers.

Our hopes? Well, most importantly, we want to capture and amplify the voices of people travelling with dementia. We'd like to work with them to develop training that truly helps people who provide services to understand what it's like to travel with dementia - we don't know what that training will be yet, but it's unlikely it will be powerpoint slides and hand-outs.

And, while testing out this new type of people-informed training, we'll be talking to transport and mobility providers, inviting them to participate, to get together and to start to work together to develop services that address the needs of those travelling with dementia.

Our very best hope? That Upstream becomes a place for people affected by dementia to come together to directly influence the development of future public services.

We've got some ideas about how this will all work out but we're setting out on this with people affected by dementia. We'll be making Upstream with them. We don't really know what we'll make until we ask people what's going to help. 

It's exciting and we're grateful for the support of the Life Changes Trust in supporting this adventure.

Is it dementia?

Here's an interesting resource from Alzheimers Australia.

Is it dementia? is a collection of video scenarios from seven sectors including transport, retail, banking and emergency services. Each presents several case studies, showing how people affected by dementia might react to certain situations and what might help. In the transport section a lost ticket or a seemingly 'tricky', forgetful customer is handled with consideration, encouraging us to think about those situations we've witnessed ourselves.

A useful reminder of the invisible nature of dementia, particularly in busy, everyday situations.