The Knowledge Exchange Blog

The official blog of The Knowledge Exchange from Idox

“A new journey”: creating a dementia-friendly public transport system

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.”

Helping people with dementia to live well through good urban design

Earlier this year, the Royal Town Planning Institute (RTPI) published their first practice note on how good planning can play a stronger role in the creation of better environments for people living with dementia.

It summarises good practice guidance from Oxford Brookes University, the Alzheimer’s Society and the Scottish Government, among others.

Living with dementia

According to the Alzheimer’s Society, there are currently around 850,000 people living with some form of dementia in the UK.  Although the risk of developing dementia increases with age, it is not just a disease of the elderly.  There are currently around 40,000 people with dementia in the UK under the age of 65.

The vast majority of cases of dementia cannot be cured. However, there is a lot that can be done to enable someone with dementia to live well with the condition. Many people with dementia can continue lead active, healthy lives for years after diagnosis.  Even most elderly people with mild to moderate dementia can continue to live in their own homes.

The importance of good urban design

Evidence has shown that well-planned, enabling environments can have a substantial impact on the quality of life of someone living with dementia and their ability to retain their independence for longer.

For example, being within easy walking distance of shops and other local amenities can help people with dementia to remain physically active and encourages social interaction.

Having access to green space and nature also has particular benefits, including better mood, memory and communication and improved concentration.

Key characteristics of a dementia-friendly environment

Drawing on the principles set out in ‘Neighbourhoods for Life’, the RTPI advises that urban environments should be:

  • Familiar – functions of places and buildings made obvious, any changes are small scale and incremental;
  • Legible – a hierarchy of street types, which are short and fairly narrow. Clear signage;
  • Distinctive – including a variety of landmarks and a variety of practical features, e.g. trees and street furniture;
  • Accessible – access to amenities such as shops, doctor’s, post offices and banks within easy, safe and comfortable walking distances (5-10 minutes). Obvious, easy to use entrances that conform to disabled access regulations;
  • Comfortable – open space is well defined with public toilets, seating, shelter and good lighting. Background and traffic noise minimised through planting and fencing. Minimal street clutter;
  • Safe – wide, flat and non-slip footpaths, avoid creating dark shadows or bright glare.

Dementia-friendly communities

In addition to specific guidance on how to improve the urban environment, the RTPI practice note also highlights the crucial role of planners in the creation of ‘Dementia Friendly Communities’.

This is a recognition process, which publicly acknowledges communities for their work towards becoming dementia friendly.  It aims to involve the entire community, from local authorities and health boards to local shops, in the creation of communities that support the needs of people with dementia.

There are 10 key areas of focus.  Those particularly relevant to planning include:

  • shaping communities around the needs and aspirations of people with dementia;
  • the provision of accessible community activities;
  • supporting people to live in their own home for longer;
  • the provision of consistent and reliable transport options; and
  • ensuring the physical environment is accessible and easy to navigate.

There are currently over 200 communities across the UK working towards recognition as dementia-friendly.  Dementia Friendly East Lothian and the Dementia Friendly Kirriemuir Project are two such examples.

Local government policy

By 2025, it is estimated that the number of people diagnosed with dementia will rise to over one million.  Significant under diagnosis means that the number of people who experience dementia may be even higher.

However, the RTPI report that at present few local authorities have made explicit reference to dementia in their adopted local plans.

Worcestershire County Council and Plymouth City Council are notable exceptions:

  • Plymouth have set out their ambition to become a ‘dementia friendly city’ in its current local plan; and
  • Worcestershire are currently developing a draft Planning for Health Supplementary Planning Document that covers age-friendly environments and dementia.

A beneficial environment for all

While these are important first steps towards the greater recognition of the role of planning in supporting people with dementia, it is imperative that planning explicitly for dementia becomes the rule, rather than the exception.

Not only will this benefit people with dementia and reduce healthcare costs, it may also benefit the wider community, including young families, people with disabilities, and older people.

As the RTPI rightly state, “environments that are easy for people to access, understand, use and enjoy are beneficial to everyone, not just older people with dementia.”

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