Transport and Dementia
We are currently funding two projects under the auspices of 'Transport and Dementia'. They are:
- Onwards, delivered by The ESP Group (Award: £120,000, Timescale: June 2017 – March 2019)
- Go Upstream, managed by Go Upstream Ltd (Award: £170,000, Timescale: June 2017 – May 2020)
To co-design, build and deliver a new, financially sustainable service for Scottish people with dementia to support the transition of retiring from driving.The service will:
- support and empower people affected by dementia as they move through each stage of the process of attending a driving assessment
- ease the transition away from driving
- promote mobility and independence by opening up non-car alternatives
- ensure that people can travel well with dementia
To build on the learning from Upstream Phase 1 and specifically to:
- deliver training for local and national transport providers that raises staff awareness of dementia and leads to service improvements
- develop the ‘shared experience’ model of learning to help transport providers and people affected by dementia to learn together
- publish a free online toolkit to enable groups of people with dementia and carers to have discussions about transport and mobility in their local area
- produce a resource that explains the rights of people with dementia when travelling
- develop bespoke support for organisations that request it
- provide services for the Onwards project which will support people with dementia who are giving up driving
The Scottish Government has estimated that almost 18,000 people will be diagnosed with dementia this year. As a result, many will be told that they can no longer drive. Loneliness is already an issue for Scotland’s elderly population – 200,000 individuals spend half a week or more with no visits or phone calls from anyone. This, coupled with a diagnosis of dementia, and being forced to give up driving, can have a massive impact on lifestyle, independence and mobility. This can lead to real issues of isolation.
In a bid to help people maintain their independence once forced to hang up their car keys, public transport expert ESP Group, has launched Onwards, a 16-month project to develop practical solutions to keep those living with dementia both mobile and connected to their community.
Thanks to research by sister project Upstream, ESP already recognises the complexity and emotional challenges of the process of retiring from driving, a transition which is particularly heightened for people affected by dementia. Onwards’ mission is to ensure every person has the means to get out into the community.
Beth Garner, Onwards Project Director at ESP Group said: “Giving up driving is a widespread challenge, but surprisingly people rarely talk about it. We tend to worry about losing the ability to drive because we face difficulties of maintaining social connections and usual activities. Confidence can be severely affected and individuals may feel uncomfortable asking others for a lift. Despite these challenges, people living with dementia can live well without a car. Onwards will pool resources to provide tools and services to make the transition to hanging up the car keys less painful and traumatic for those living with dementia. Our hope is that this project can make transport and mobility even better than when people were driving, and, the ultimate goal is to create a sustainable scheme that can be rolled out not just in Scotland, but across the rest of the UK.”
Getting out and about and being involved in community life is an important part of living well with dementia and mobility service providers play a key role in this. However, the challenges faced by people affected by dementia mean that they may find travel daunting. Dementia affects so much more than memory and travel can be noisy, busy and disorienting.
If the growing number of people living with dementia are to maintain their independence then transport and related services need to respond and develop in ways that are informed by real-life experience. Upstream is working with people with dementia across Scotland to discover and share their experiences of travel. Thier aim is to put the voice of people with dementia at the heart of future mobility service design by developing training for mobility service providers and creating spaces for everyone to participate and contribute to the conversation.
The project builds on a previous grant to the ESP Group to deliver the Upstream Transport and Dementia initiative, which was carried out from March 2016 to February 2017.
During this initial project, Upstream worked with people with dementia across Scotland to discover and share their experiences of travel. Their aim was to put the voice of people with dementia at the heart of future mobility service design by developing training for mobility service providers and creating spaces for everyone to participate and contribute to the conversation. The work covered a range of issues, such as accessible transport, rural challenges, community transport, dementia friendly transport, and how people with dementia are assisted in planning their travel.
Working with Life Changes Trust projects in East Lothian, Aberdeen and the Western Isles, Upstream developed local contacts with transport operators and dementia support organisations. They met with existing dementia support groups and used a workshop format to facilitate friendly conversations around travel, transport and generally getting out and about. Insights were then collected from these gatherings and used to develop different types of training. There was then a conference, held in December 2016, at which findings were shared. This project was led by people with deep knowledge of transport systems in Scotland and with solid links to major transport providers.
In the Western Isles Upstream worked closely with the Dementia Friendly Community project at An Lanntair along with Alzheimer Scotland, regularly visiting various groups in Stornoway and more remote locations to learn about the challenges of island transport, with a particular focus on sea and air links.
In East Lothian there were strong links with Dementia Friendly East Lothian and the North Berwick Coastal Area Partnership, incorporating the Older People's Network. Workshops were held with memory skills groups and day centres to gather insights about travel in an area which, though close to Edinburgh, has many rural areas and related transport challenges.
Supported by the Aberdeen Council of Voluntary Organisations (ACVO) and Alzheimer Scotland Upstream also worked with people living with dementia in Aberdeen City and explored links with local transport operators and planners.
Click the image below to download the Upstream Phase 1 Report:
The focus of the project now is to co-design, build and deliver a new, financially sustainable service for Scottish people with dementia to support the transition of retiring from driving.
Founded in 2018, Go Upstream Ltd is building on work supported by the Life Changes Trust, exploring the challenges of travelling with dementia. By bringing people with dementia together with travel service staff, Go Upstream helps people to share experiences and expertise, improve travel services and build a better understanding of dementia by designing solutions together.
Dementia and Driving
Go Upstream is supporting Project Onwards to develop a service to support people who have had to stop driving, or will stop driving, due to a diagnosis of dementia. This was an issue raised in early Upstream research and Onwards is exploring how we can provide help people to navigate through this difficult transition by learning about alternative transport options, using their driving budgets in new ways and by drawing support from the stories of others.
Outcomes we'd like to see
Supported by the Life Changes Trust, the project will design and deliver financially sustainable, tangible solutions for Scottish people living with dementia who have had to retire from driving – whether this is a car sharing scheme, adjustments to public transport or a community mobility programme. Crucially, these solutions will be co-designed by people living with dementia, drawing on their own direct experiences.
The proposal for Phase 2 focuses on delivering training that raises staff awareness of dementia and that leads to service improvements that improve confidence, reduce anxiety and make systems simpler and clearer. Go Upstream will become a social enterprise which will do the following:
- having trialled training in Phase 1, provide further, refined training for national and local transport providers
- develop bespoke support for organisations that request it
- enable wider discussion amongst people living with dementia and carers in local areas so they can influence the mobility and transport provision most relevant to them as well as contributing to Upstream’s growing collection of travel insights
- publish a free online toolkit that enables groups of people with dementia and carers – for example, DEEP or TIDE groups or dementia friendly communities – to have the discussions outlined above
- develop the ‘shared experience’ model of learning which helps transport providers and people affected by dementia to learn together about the impact of travelling with dementia
- produce a resource that explains the rights of people with dementia when travelling – there are numerous legal rights but these have not been drawn together into one resource
- provide services for a project that supports drivers who have dementia and who are making the transition of retiring from driving and finding new means of mobility
Upstream will generate revenue from training and consultancy services and applications to fund specific projects. It will help its clients to create improved services that are more enabling for people affected by dementia.
Upstream Website: http://www.upstream.scot/