Making Gatwick Airport dementia-friendly

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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

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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

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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 think...my 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

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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

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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

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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..."

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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

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

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

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

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

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

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

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

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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...

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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?

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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.