Transport for Disabled People Stakeholder Feedback

Alzheimer Scotland's response to the Department of Transport consultation submitted 16 January 2006

Alzheimer Scotland is a national charity representing the interests of Scotland’s estimated 63,000 people with dementia, and their carers. We aim to be the voice of and for people with dementia and their carers, to influence the improvement of public policies and to promote and provide high quality services for people with dementia and their carers.

We are responding to the consultation as representatives of people with dementia and their carers, and not as transport providers. However, the timescale for responding is very short, particularly when compared to the standard consultation time periods allowed by government departments. It did not allow us to consult widely with people with dementia and their carers on the issues raised in the document.

Dementia is a progressive brain disease that impacts on the independent functioning of the whole person, affecting their cognitive, psychological and physical health. Dementia can severely limit ability to travel because of behavioural problems for some individuals and impairment of motor function and co-ordination for others. Some of the mobility needs of people with dementia are not essentially physical; however, this does not stop them being mobility needs. This includes challenging behaviour, vision/spatial awareness, disorientation and physical deterioration. A person with dementia will also need a companion on all outings at some stage in their illness.

Public transport - people with dementia
Public transport is essential to people with dementia, as they will be unable to continuing driving at some stage in their illness.

Some of the problems people with dementia and their carers face when using public transport include paying fares/problems recognising coins, recognising the route, knowing where to get off and a lack of understanding from the driver/other passengers.

Equality of mobility for people with dementia
For a person with dementia this means addressing the problems that limit their ability to travel as freely as others, such as tackling physical barriers, providing clear information and having the entitlement for a companion travel free of charge.

Purpose of research and objectives
We welcome this important research. To be fully effective it is crucial to recognise that both mental impairment and physical disability impact on mobility. The objectives are positive as they endeavour to examine the current situation, identify problems and measures required to address them.

Seven key challenges
The seven key challenges seem fairly comprehensive. However, they do deal mainly with the physical issues. It is also important to consider other important factors such as signage and public transport staff awareness.

The opportunity to be accompanied by a companion from door to destination
This is relevant for people with dementia, as they will need a companion at some stage in their illness. It is important that the person with dementia is entitled to have a companion travel with them free of charge and that it does not have to be the same named individual for all journeys. It is likely that the person with dementia will have more than one person providing support.

It is also important that any scheme is national to ensure fairness and avoid confusion in entitlement. At present such concessionary schemes are area specific and do not include rail services. Furthermore a diagnosis of dementia does not automatically qualify a person for the scheme.

The Scottish Executive has recently consulted on a Scotland wide free bus scheme for those aged over 60 and disabled people. In our response to this consultation we put forward the case for people under the age of 60 with a diagnosis of dementia to qualify for the scheme. We also felt that people with a diagnosis of dementia should qualify for the extended entitlement scheme, as they will become dependent on others for help and assistance when travelling.

Adding on a flexible, user friendly, fully accessible, affordable door to door element to existing transport provision
This would be beneficial, as alternatives such as taxis are costly and people with dementia are likely to have restricted income. Existing services are area specific and again dementia per se does not give entitlement to using them. People with dementia and their carers would benefit from such services, as issues such as challenging behaviour and confusion mean that it is beneficial to be able to travel from home to a destination with the least possible difficulty.

Further provision and stricter enforcement of disabled parking
There are problems with abuse of existing disabled parking. If there was stricter enforcement it might not be necessary to add additional parking. It is also important to encourage measures to address the abuse of disabled spaces in private car parks, such as shopping centres.

At present a diagnosis of dementia is not sufficient to give entitlement to the blue badge scheme. Parking close to a destination is often important for people with dementia and their carers, due to behavioural and memory problems. Alzheimer Scotland's position is that the eligibility criteria for Blue Badges should cover people who require supervision due to personal safety when left unattended e.g. they may wander and become lost, behavioural issues or a combination of physical and psychological impairments that result in the person with dementia requiring supervision and/or walking assistance.

Once the review is complete the terms of the blue badge scheme should be publicised more widely and it should be made clear that the blue badge covers the person with the disability, not the vehicle or the driver. From a focus group of people with dementia it was apparent that some people thought they had to be a driver to apply.

Providing a reliable pre and during journey information service
The provision of clear well considered information is very important for people with dementia. The real time information that is now given at some bus stops in relation to the time the next bus will arrive is significantly better than a printed timetable. Clear signs at bus stops are vital and numbers on buses need to be clear and readable from a distance.

It would be beneficial if information could be standardised and in Plain English, as familiarity and clarity is important for people with dementia. Some of the written and oral language used by transport providers is not everyday vocabulary and is unnecessarily complex, for example terms such as ‘alight’.

In order to identify suitability, signage and information material should be reviewed by people with dementia.

For people with dementia human contact is often more appropriate than written information. We have discussed this under additional comments.

Making existing conventional public transport provision easier in relation to; physical accessibility, other accessibility, freedom from fear or intimidation and affordability
These are all positive measures for people with dementia’s use of public transport and would have a benefit for the wider population.

Improving the physical environment of public transport buildings and infrastructure e.g. railway stations, and the pedestrian environment e.g. kerbs, stairs
The standard of physical environment varies enormously. Absence of clutter and good signage are key elements for people with dementia.

Building customers’ confidence and trust in a transport system that by its nature involves a chain of provision
Most people with dementia know their limitations and will only tackle journeys they are familiar with. On such journeys predictability is vital. Building customer confidence in the transport system should enable people with dementia greater freedom to travel than before.

Priorities for action and additional comments
As outlined above the priorities for people with dementia are clear information and good signage. Other important factors are the understanding and assistance of drivers and staff. Often a key factor in allowing a person with dementia to use public transport successfully can be a helpful considerate driver who is aware of the need to be patient with someone who has an invisible disability.

People with dementia would benefit from the following when travelling on public transport -

• Disability awareness training, including dementia awareness, for staff that come into contact with passengers or provide passenger information.
• For longer journeys especially, a simple system of informing the transport provider that a person with dementia will be travelling alone to ensure they are informed when to get off and assisted when there are any changes such as a different train platform. A standardised system across transport providers for ensuring support for passengers who will need additional assistance would be beneficial.
• A clearly marked staffed information point in train and bus stations.
• An easily found meeting point in train and bus stations.
• A quiet space for people who panic when travelling.
• More standardisation in ticketing to reduce confusion, and more distinctive/larger tickets especially when they are required for an ongoing or return journey.