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.