When we ask people affected by dementia about their travel experiences we often hear similar themes emerging through their stories.
People lose their confidence to travel
People affected by dementia have told us that poor experiences have dissuaded them or even deterred them from travel. Knowing that a journey will be successful, being able to plan with confidence, is key. However “purchasing tickets is confusing - some discounts are only available bought before - machines are confusing” and “differences in fare structures in same town / different tickets - causes confusion”. Planning connections between different transport modes can be a challenge, particularly when booking complicated itineraries.
During the journey itself, “reserved seating on trains is confusing”. People affected by dementia are less able to respond quickly to the speed of travel, wondering why stations “announce platforms JUST before train leaves/change platform”. They can feel under pressure “being pushed by people in the line behind me” and “time is short - lots of rushing, distraction”. Poor access to toilets is a key issue, during journey and at destinations “no seats, everyone stood and had a long wait - no toilet”.
Operator staff have an important role in helping to alleviate some of these issues, however a common comment can be “some conductors are so grumpy”...”the driver can make or break my day”... “Imagine if everyone smiled”.
Wendy Mitchell describes it well in her dementia diary “The main barriers are often other people thinking you can’t, instead of helping you to find other ways to remain independent”
Even reaching public transport might include challenges such as “cracked pavements and potholes” or a need for “more time to cross the street” at pedestrian crossings.
People feel anxious or unsafe
People talk a lot about anxiety, about falling or injury, worried that “Drivers pull away before folk sit down”, or not feeling “confident that they could stay seated until the bus actually stops”. Train travellers and people walking through airport security report that “Being separated from luggage ... causes anxiety”.
We've heard that a “blue badge doesn't fix problem of dropping off - dropping off then needing to drive a long way to park causes anxiety”. People have told us about empty platforms or unmanned stations with nobody to ask for help and making connections can be a source of anxiety “Live bus info not always live - have I missed the bus?”
Travel processes can be complex, inconsistent and confusing
People affected by dementia describe poor or inconsistent processes, information and environments: “signage on bus stop ... numbering can be confusing”, “Buttons I have to press for doors and toilets on trains are inconsistent and confusing”, “some timetables use 12 hour clock and some 24 hour clock - confusing”.
There are “too many ID/assistance cards - confusing - please combine”.
There are often discussions about ”Inconsistency about when/where we can use blue badge” ... “systems seem to differ from place to place - confusing”.
Even the design of pedestrian crossings can cause confusion. “It would be better if you could see the green man when crossing” or “the green man isn't always on the opposite side of the road”.
People are calling for simplicity and consistency “ ... Is it better to use National Concessionary Card or Senior Railcard? Make it Simple!” and “Consistency is very important”
“A message for Bus owners ... could you look at changing the bus time table to make it more easy reading?”
The inequalities of travelling with dementia
A number of issues have been raised suggesting inequalities when travelling with dementia. The increased use of technology can enable people but can be a barrier “I don't want to/can't buy online - disadvantaged?” ...“cheaper tickets are online - discriminatory“.
Could there be “discounted services and deals for multiple journeys”? People have discussed the “rules for bus wheelchair spaces not (being) clear”. There has also been some confusion and misunderstanding around the eligibility of people affected by dementia to obtain Disabled Parking permits (Blue Badges).