For people living with dementia and their carers, access to reliable and safe transport helps to maintain social connections and a reasonable quality of life.
The issue of driving can become complex and emotionally fraught for all involved. A need exists to ensure the person with dementia remains independent and able to drive for as long as it is safe. However, it is also essential that appropriate support and information on alternative transportation options are available to make the difficult transition to non-driver as smooth as possible.
The Australian Institute of Health and Welfare estimates that 80 per cent of people living with dementia in the community (approximately 200,000 people in Australia) need assistance with private transport. The potential impact of unmet needs for transport are social isolation, feelings of frustration and reliance on carers for basic needs.
Some symptoms of dementia, such as memory loss, difficulty performing certain tasks and language problems, make it difficult to organise transport. Dr Helen Feist, Acting Director of the Australian Population and Migration Research Centre at the University of Adelaide, says improved mobility provides older people with a sense of independence and control over their lives.
“It gives them autonomy, as well as feelings of active citizenship and belonging,” she says. “These issues are critical to people’s wellbeing in later life. As Australia’s population ages, the ability to engage independently with the community through adequate and reliable transport is becoming more imperative.”
The transport needs of people with dementia vary with the stage and type of dementia. Individuals diagnosed in the early stages are generally capable of maintaining their regular activities for a limited period; many continue to drive and are capable of using public transport for some time. However, Alzheimer’s Australia NSW CEO, The Hon. John Watkins AM, says that as the condition progresses, carers tend to carry the main responsibility for meeting transport needs. “And this can be a daily stress for them,” he says.
In research conducted by Alzheimer’s Australia NSW, people with dementia and carers said that transport needs to:
• Involve people trained in dementia awareness and management;
• Provide escorts, especially for people who do not travel with a carer;
• Provide ‘door-to-door’ or ‘door-through-door’ service, rather than ‘curb-to-curb’;
• Involve no waiting;
• Be flexible; and
• Be available at short notice.
At some point, all people with dementia must stop driving. This point will vary depending on the symptoms experienced and how rapidly they progress. Any driver diagnosed with dementia has a legal obligation to report to Roads and Maritime Services (RMS) in NSW. This does not automatically mean that their licence will be taken away, but they will need their doctor to complete a Medical Report Form.
They might also be required to have a practical driving assessment conducted by an occupational therapist. If they continue to drive despite a doctor’s advice and are involved in a crash, they could be prosecuted and their car insurance might be invalidated.
Trevor Crosby, 67, was diagnosed with dementia two years ago. In December, he successfully passed a driving assessment conducted at the request of his neurologist. The test involved a series of reaction, retention and road-rules scenarios. Trevor will take a similar driving test every six months.
“I would recommend not to resist doing the tests once your specialist or GP recommend them,” Trevor says. “I can’t imagine the terrifying effects one would experience if they were involved in any sort of accident. Play it safe and act on qualified advice as soon as it is suggested.”
Bernard Carlon, Executive Director for Road Safety at Transport for NSW (RTA), says driving is a complex task that requires attention, memory, judgement and the ability to plan.
“Dementia, particularly when it advances, can diminish the skills needed to drive to the point where it becomes unsafe,” Bernard says. “If you have been diagnosed with the early stages of dementia, we encourage you, your family or carers to plan ahead and consider your mobility and transport needs.”
For more information, visit the Centre for Road Safety website: http://roadsafety.transport.nsw.gov.au/stayingsafe/ontheroad-65plus/dementia.html
Public transport is a great alternative to driving. But if that’s not an option, there are two other main alternatives: the Taxi Transport Subsidy Scheme (TTSS) and the Community Transport Organisation (CTO).
Public transport – Opal Gold Card
The Gold Senior/Pensioner Opal card has now replaced paper tickets for all forms of public transport in NSW. It is capped at $2.50 per day regardless of distance travelled. It applies to all Sydney trains, TrainLink intercity services, buses, transport to the Blue Mountains, Central Coast, Hunter and Illawarra regions, all Sydney ferries and the Stockton ferry in Newcastle, and all light rails. The Gold Senior/Pensioner Opal card is available for NSW seniors, pensioner concession cardholders, and NSW war widows and widowers. For more information visit: http://www.transport.nsw.gov.au/content/opal-card
Taxi Transport Subsidy Scheme
The Taxi Transport Subsidy Scheme (TTSS) provides subsidised travel for approved participants to travel by taxi at half fare with up to a maximum subsidy of $30 per trip. This is available to people who are unable to travel on public transport without the assistance of another person. Each application is reviewed by Transport for NSW’s independent medical assessor.
Aged, invalid, blind or other pensions do not automatically qualify for participation in the TTSS, and participation is not means-tested. The NSW Government has implemented an incentive payment for drivers of wheelchair accessible taxis to improve the accessibility, reliability and response times for TTSS participants who require a wheelchair at all times for travel. For more information visit: http://www.transport.nsw.gov.au/customers/taxis/ttss
Community Transport Organisation
Across NSW, community transport groups provide assistance for people to continue living an independent life. Community transport groups provide not-for-profit passenger transport services that cater to the needs of individuals and their carers who cannot make use of existing private or mainstream public transport, or where public transport services are not available. For more information visit: http://www.cto.org.au/
Other alternatives are covered in Staying on the Move with Dementia, available at NRMA offices, by phone at 131122 or online at: https://www.mynrma.com.au/media/lwn/NRMA___Staying_on_the_move_with_dementia___booklet.pdf
Accessibility apps are designed to provide better services and information for people with a disability to confidently use public transport in NSW. Three apps are available to download on the iTunes and Google Play platforms, and several other accessibility apps are currently in development and will progressively be released, the NSW government says.
abil.io helps users with limited mobility access public transport. Users can plan their trip in real time and be provided with comfortable walking distances that avoid significant uphill or downhill slopes and stairs. Information is also provided on internal routing in stations, proximity to accessible parking and ground services. Trip plans are automatically updated if services are delayed or cancelled, so users can easily navigate around any issues.
Metarove is a public transport trip-planning app for people with limited mobility or who use a mobility aid such as a wheelchair, scooter or crutches. The app uses real-time information to provide routes that cater to the individual user’s accessibility needs. When accessible routes are required, it filters out buses, trains, stations and stops that are flagged as not wheelchair friendly. It even alerts customers if a selected station has a short platform and advises which carriages to board. The app can also be customised based on personal walking speed and maximum distance to travel.
Stop Announcer is for people with vision impairment who need help navigating on public transport. It features a clear, high-contrast display and is designed to work with the Android accessibility feature TalkBack to provide prompt, easily audible announcements as users arrive at bus stops, train stations, ferry wharves and
light rail stops.
For more information visit: www.transportnsw.info/apps
ACCESSIBILITY TRANSPORT ADVISORY COMMITTEE
Barry Freeman represents Alzheimer’s Australia NSW on Transport for NSW’s Accessible Transport Advisory Committee (ATAC), which is a forum for identifying and considering opportunities and barriers in the current transport system. Barry worked as a chemical engineer and in the private sector prior to his wife, Joanie, being diagnosed with Alzheimer’s disease.
“I needed to care for her full-time. Our experience with dementia has involved me as a full-time carer for four years until there became the need for residential care because of Joanie’s deteriorating health as well as my own, to a degree,” Barry says. “I’m still involved with her most days of the week to give her outings and physical exercise to ensure that she has the best quality of life that I can give her.”
Barry says transport is critical for those with dementia, and certainly their carers, as there are many needs for travel within the caring role. “Examples are medical appointments, respite from home care, and just the enjoyment of going somewhere for a movie, a show, the beach or the country. It all is necessary to maintain some quality of life,” he says.
“The ATAC committee meetings are very interesting in terms of understanding what Transport for NSW is doing with various forms of transportation. It also gives various interest groups a real opportunity to input their concerns and needs about the relevant planning that goes on in the development of new and existing transport initiatives.
“The committee has the opportunity to really influence the final outcomes of these projects. I know that Transport for NSW values the input they get from ATAC, and I’m sure we make a difference for those with challenging situations in their lives, ensuring their needs are more effectively understood and catered for.”
INDIVIDUALISED FUNDING AND TRANSPORT
Planning for Transport in Self-Directed Care is a new information booklet about transport options included under new self-directed care models through the Federal Government’s National Disability Insurance Scheme, home care packages and the State Government program Living Life My Way. Not only does it set out transportation options available for people with dementia, but it also aims to help people understand the value of transportation in maintaining connections and social engagements for those affected by a dementia diagnosis.
“It is important to ensure that people with dementia are valued and respected community members, experiencing a fulfilling range of life opportunities and choices,” says Minister for Ageing and Minister for Disability Services The Hon. John Ajaka, MLC.
The resources are a reminder for people to think more about transport when considering care, says Alzheimer’s Australia NSW CEO The Hon. John Watkins AM. “To ensure mobility and social participation, you need to make sure you explore and plan your transport options following a diagnosis of dementia,” John says.
“People tend to think about personal care and domestic care that can help them, but we don’t want them to forget the benefits they’ll get from transport. This information equips people with dementia and their carers to make more informed choices and use package funding wisely.”
For a copy of Planning for Transport in Self-Directed Care phone the National Dementia Helpline on 1800 100 500 or visit www.fightdementia.org.au