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.