People diagnosed with dementia can live independently for many years – in fact, 1 in 3 people with dementia are still able to drive safely.  However, as the disease progresses, people with dementia must eventually stop driving.  Public transport can be a good alternative to driving for those in the early stages of dementia, enabling them to stay connected with their families, friends and local communities, and provide access to healthcare.

Indeed, the provision of easily accessible public transport options is a key aspect of dementia-friendly communities.  It is difficult to overstate its importance:

“If I didn’t have coping strategies to remain independent and mobile I’d be very lonely and soon sink into depression. Travel brings normality to an often abnormal life” Wendy Mitchell, recording a Dementia Diary for Upstream

However, the challenges faced by people with dementia mean that travelling by public transport can be daunting.  This is because dementia affects more than just memory.  Environments that are noisy and busy can be extremely disorientating for people with dementia, particularly when there are added time-sensitive elements such as bus or train times.

People with dementia often lose the confidence to travel.  They may experience difficulties purchasing the correct tickets, become confused by different fares or travel options, or feel hurried or pressured.  They may feel anxious or unsafe, for example, when becoming separated from their luggage or they may have a fear of becoming lost, or getting off at the wrong stop/station.

In addition to the cognitive, emotional and sensory challenges faced by people with dementia when travelling, there are a number of additional barriers.  These include:

• Difficulties with journey planning
• The use of fast changing technology which can exclude certain groups of people
• A lack of service integration
• Staff with limited awareness of the needs of people with dementia
• Poor, inconsistent or confusing signage – or unclear rules regarding reserved seats/spaces

Policy and practice

The UK has set out the goal of becoming the best country in the world for people with dementia by 2020.  It has made some significant steps forward – currently, there are now over 200 communities working towards becoming ‘dementia friendly’.

In regards to transport improvements specifically, earlier this year, the Bus Services Act gained royal assent in England.  The Act provides powers to ensure that buses make both audible and visual announcements about the route and the next stop.  These reminders can help to reassure people with dementia.  The government has committed to work alongside the bus industry, passengers and disability groups to develop the policy further.

The government is also currently consulting on a draft ‘Accessibility Action Plan’, which addresses the barriers faced by people with disabilities using public transport, including a focus on hidden disabilities, such as dementia.  It also commits to updating existing guidance on ‘inclusive mobility’ to incorporate current knowledge and understanding of the needs of those with hidden disabilities such as dementia.

Involving people with dementia in service design

Involving people with dementia in the design of services can help to ensure that their needs are addressed.  Upstream is a project that does just that.  It helps to give people living with dementia across Scotland a voice in the design of future mobility services.

Projects have involved visiting various groups in the Western Isles to learn about the challenges of island transport, workshops to gather insights about travel with Dementia Friendly East Lothian and the North Berwick Coastal Area Partnership; and developing training programmes in conjunction with transport providers.  They have produced a report of their work so far.

Use of technology

The expansion of real time audio and visual information as set out in the Bus Services Act provides a good example of where technology can be used to make transport more accessible for people with dementia and other disabilities.

Other ways in which technology may help include the expansion of live departure boards at bus stops and increasing the use of journey planners – either online or via the telephone.  Apps may also have the potential to help organise shared modes of transport for groups of people in rural areas, and in the future, driverless cars may offer an additional transport option for people living with dementia.

Improved awareness of dementia among travel staff

Improving awareness of dementia among transport staff, and developing training programmes on how to respond to the needs of passengers with dementia, is another key way in which services can be improved.

For example, East Anglia Trains, has worked with the Dementia Society to deliver a dementia-awareness training pilot for staff at four of its stations, and plans to roll this out to all East Anglia staff. Arriva Rail Northern has also announced funding to develop the Bentham Line from Leeds to Lancaster and Morecambe as a ‘centre of excellence’ for people with dementia.

Transport assistance cards are another example of possible ways to improve transport for people with dementia. These cards record details of an individual’s needs so that the individual can show the card privately to the driver or other travel staff as a means of asking for extra assistance. Many individual transport operators and local authorities across the country already issue such cards.  Standardising these schemes across the UK may be one way to help improve people’s confidence when using public transport.

Future developments

While these initiatives are making a significant impact, there is still much to do.  If the growing number of people living with dementia are to maintain their independence, then it is essential that transport services become more dementia-friendly. Bringing together the shared knowledge and experiences of those living with dementia, and the skills and experience of professionals involved in the design and delivery of transport services will help to create a more inclusive, person-centred public transport system.

Dr Joy Watson, an ambassador for the Alzheimer’s Society who herself has been diagnosed with dementia, sets out an admirable goal:

“A diagnosis of dementia is not the end of the road, but the beginning of a new journey.  Some people need a little more help to take the first steps, and if I can contribute to them living well, then my mission is fulfilled.”