Drawing from Experience

Can we use comics to describe the experience of living and travelling with dementia?

Here at Go Upstream we’re delighted to announce the launch of our new project, Drawing From Experience.

Developed in association with V&A Dundee and University of Dundee, and funded by the Dementia Services Development Trust, Drawing From Experience will take a new approach to ensuring that the voices of people living with dementia are heard by service providers and designers – through the medium of comics, and aided by the skill of some very talented artists.

An exceptionally expressive medium, comics and graphic novels have a long and fascinating history and are increasingly appreciated for their use in describing personal experiences. Autobiographical comics are popular, and along with the growth of medical humanities – an interdisciplinary field focusing on how literature and culture contribute to medical education – an associated genre of comics has evolved, named ‘Graphic Medicine’ by doctor and comic artist Dr Ian Williams. There has already been a lot of local work in this direction; in 2017, a collaboration between the University of Dundee’s Scottish Centre for Comics Studies, Ink Pot Studios, Christopher Murray of Comics Studies and Divya Jindal-Snape of the School of Education and Social Work produced an excellent comic that deals with issues of fibromyalgia.

Our project relates to this exciting area of research: Drawing From Experience will use comics as a way of engaging with and representing the varied personal and travel experiences of people living with dementia. We will commission comic artists to take journeys with people living with dementia and collaboratively develop work that describes that experience.

We’re curious:

Image: sketch of a bus ramp - can we develop images with people with dementia to accurately describe experience?

Image: sketch of a bus ramp - can we develop images with people with dementia to accurately describe experience?


  • Can this approach help people with dementia to more accurately describe their experiences?

  • Can we gain new insights that lead to the development of more inclusive services?

  • Can comics and graphic novels provide information and training materials that are more accessible?

  • Can the outcomes inform local development plans and transport networks?

With their combination of the visual and the textual and flexible nature, comics have already been used as a unique learning medium in all sorts of contexts. This is what we have in mind – we’re hoping the work created will be used as both an information and teaching tool by transport providers, helping them understand the travel issues faced by people with dementia and how to make their services more accessible.

This is all just starting off and we’ve organised a launch event which will get the ball rolling and see the project sparking connections between different groups. It will take place on Friday 22 March at V&A Dundee. We’ll have some exciting speakers talking about comics, travel and dementia. We’ll hear from local experts about the use of comics in health education, including Megan Sinclair, a PhD student from University of Dundee who will talk about the comic she created exploring her own experience of bereavement.

Join us for a creative afternoon and help us to spark ideas for telling stories that can help to influence the design of services that are truly inclusive.

You can sign up here.

This is just the start of our project, and we’re really excited to see where it goes!

Making Connections

Sign at rail station that says ‘Way out via 58 steps’

Sign at rail station that says ‘Way out via 58 steps’

How joined-up are your journeys?

We often have to make connections between services. Between the bus and the train, or the train and the taxi... sounds simple but there could be a lot to consider when navigating these spaces.

When I leave the station, will it be obvious where the next service leaves from? What’s the environment like? Is it step-free? If there are 58 steps up to the street, is the lift working today? Is it well lit? If I’ve booked assistance, do services talk to each other and will somebody know that I’ve arrived?

Travel connections can be challenging, potentially creating barriers to travel. And if the challenges lie in the spaces in between services how do we discover them, how do we go about reducing barriers and who is responsible for making improvements?

This will be the focus of a new project that brings together a broad group of partners, led by Go Upstream and funded by Transport Scotland - we’re calling it Making Connections: the spaces in between. We’ll be bringing disabled people and transport providers together to experience connections together and explore what we can do to improve them, together.

We’re tapping into the expertise developing here in Scotland around improving environments and services for people with dementia . Making Connections will benefit hugely from the growing network of projects and organisations funded by the Life Changes Trust - partners include StudioLR who are working on improving signage, Paths for All who are changing the way that we think about inclusive outdoor environments and the British Deaf Association who will ensure that the views of deaf people who are affected by dementia are included. We’re also delighted that Alan Ainsley is part of the team, combining his design expertise with experience from developing services such as Macmillan’s Transforming Care After Treatment (TCAT) programme. The University of Edinburgh are our evaluation partners and PAMIS bring their unique experience of supporting people with profound and multiple learning disabilities.

We’re just starting this all off, working with CalMac, NorthLink Ferries and ScotRail to explore connections between trains and ferries. We’re inviting operators and disabled people to initial workshops, to join us on journeys to navigate connections on Scotland’s east and west coasts, and help us to identify connection barriers that people face. We’ll then develop ideas for improvement - aligning with Scotland’s Accessible Transport Framework.

Yes, we’re aiming to find some immediate improvements, but we’re also looking to develop a new way of working, a model for exploring travel environments and connections together.

**Our first workshop will take place in Aberdeen on 22nd February - you can sign up here.

More information and updates over at www.makingconnections.scot

'Welcome' Aboard!


Today we’re announcing a new project that Go Upstream is leading, working with people with dementia to improve the experience of assisted rail travel.

Our project team was among the winners of The Rail Accessibility Competition, run by the Rail Safety and Standards Board (RSSB), which awarded grants to organisations ‘... whose innovative ideas will make a difference to the lives of disabled passengers travelling on the railway’.

We hear some great stories about travelling by rail and services such as Passenger Assist can make a real difference for people who need help getting on and off trains and making connections. However, we’ve also heard stories about people not being met or assistance not being available. Circumstances can change quickly during a journey - disruption, delays, cancellations and bus replacement services can disrupt the support that Passenger Assist offers and a simple journey can become a complicated and anxious situation for passengers and staff alike.

We’re not the only ones. This Office of Rail and Road research, carried out over 4,000 interviews about the experience of Passenger Assist and found that passengers wanted better staff training about disability, reassurance that they will be met, revisions to the booking system and improved arrangements at the station.

Now, Go Upstream is all about better staff understanding and designing an improved service, but improving the system will need some technical input. Enter Neatebox, an Edinburgh-based company who have developed some brilliant technology in the form of the Welcome app, developed to enable people with disabilities to arrange personalised assistance at destinations such as offices and hotels.

So, we wondered, could ‘Welcome’ be used to enhance Passenger Assist and provide a more personalised experience of arranging and receiving support? And if we combine it with Go Upstream’s experiential training to improve staff knowledge of dementia, could we improve the assistance experience even further? Well maybe, but we won’t know for sure unless we work closely with people with the greatest expertise - people who live and travel with dementia. So we asked our friends at DEEP if some of the groups in its national network of people living with dementia might be partners in the project.

Of course, as passengers, we’re only one half of the assistance story. The teams who deliver the service are also full of experience and ideas. Who better to partner with than LNER, who operate east coast rail services on routes totalling 936 miles, from Inverness and Aberdeen to London and many places in between.

But wait, there’s more! We also need to ensure that we’re bringing everybody’s design skills into the mix and building a service that reflects everyone’s needs. So when we asked our friends Hazel and Mike at Open Change in Dundee if they would join in too, we were delighted when they said yes. Open Change are service design experts with a wealth of experience in helping groups to realise their design potential and build solutions together.

As Hazel says ‘Making public transport inclusive for everyone is a great opportunity - and a challenge’

It is indeed a challenge and I’m looking forward to taking it on with a brilliant team and the support of the competition organisers the RSSB. The ‘Welcome’ Aboard team not only brings a wealth of experience and enthusiasm but we’re collectively on a mission to weave the expertise of people living with dementia into the development of new services.  



If you’re building a digital service then onboarding is a big deal - it's the process used to introduce new users to sign up for, or join, a service. UserOnboard looks at how various services do this and describes it as 'the process of increasing the likelihood that new users become successful when adopting your product'.

You know that really nice online experience - it feels easy, safe, clearly explained, no surprises. You'll also probably know other, less-than-happy experiences - clunky, not feeling secure, not sure what's happening next or where you are in the process.

It’s important to help your customers to get know to your service, to orient them and help them to know what to expect. The language used and the context created helps us through a process and, if it doesn’t go well, we might give up or, even worse, tell others about the poor experience. 

I've been wondering about the experience of boarding a plane, thinking about it as joining a service. Boarding as Onboarding. After all, it's the point at which you move from the airport to the airline - it might even be your first offline interaction with the airline. 

Here are three recent, different experiences I've had - we'll call them Gate 1, Gate 2 and Gate 3:

Gate 1

We actually boarded a bus because the plane was parked miles away. It was 6:45am, cold, wet and windy. After a slightly uncomfortable ride to the other side of the airport, we were delivered to the plane, exposed to the elements as the bus drove away. 80 people, one staircase. It was a long, cold and damp wait for those of us near the back of the queue.

I guess if anyone had booked assistance they would have taken a separate journey to the plane? I hope so. 

Gate 2

For a start, the signage about where to queue at the gate was confusing and, as the crowds gathered, the level of confusion seemed to increase.  Since it was a full flight, passengers were invited to volunteer to put their hand-luggage in the hold and in return they would be given priority boarding.

A few minutes later three recorded announcements invited different groups to board:

  • Those who had paid for priority boarding,
  • those with children
  • people 'requiring assistance'

A fourth announcement invited passengers who had volunteered their hand luggage for the hold but, since there was nothing recorded for this, it was shouted.

In the meantime staff walked along the line telling people to put small bags inside bigger bags… but nobody was really sure why. 

All of these announcements competed with others from a nearby gate, along with the general hum of the airport. I could barely hear a thing and, from the confused looks around me, I wasn’t the only one. 

I hope I don't have to board through Gate 2 again.

Gate 3

A better experience. My boarding pass simply had the words Group 4 on it.

Groups 1 to 3 boarded first and I had no idea why - maybe they'd paid extra or requested earlier boarding. Maybe they'd won a raffle. I didn’t know or need to know. The process was easy to understand, clearly explained and had no surprises.


It can't be easy moving hundreds of people through a door and onto a plane against the clock, answering questions and checking passports, but there must be ways to make these stressful situations less intimidating, less uncomfortable. 

Having made it through security, anxiety levels already high, it can be yet another set of decisions to make with more queuing, more instructions to follow, all based on announcements that can be less than clear.

If boarding was treated as onboarding, a vital part of designing the travel experience, perhaps it could add to a journey rather than turning it into a bad story that we tell for years to come.

'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.


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! 


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

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Visiting the ADI conference gave me opportunities to reach out to see who I could connect while there and was lucky enough to be introduced to Makoto Okada, Director of the Co-Creative Social Ecosystem Project at Fujitsu Laboratories and also a leading figure in the Dementia Friendly Japan Initiative (DFJI).  We discovered a mutual interest in improving transport for people affected by dementia as DFJI has a special interest group focusing on transport. Makoto was kind enough to organise an evening gathering in Kyoto, coinciding with the conference, bringing together a group of around 30 people to learn about work in Scotland and Japan and to exchange ideas. Participants included occupational therapists, GPs and researchers.

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

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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. 

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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.