Dementia already affects 750,000 people in the UK. According to the Alzheimer Society, by 2050, this number will be closer to two million, with three or perhaps even four times as many people affected indirectly.
Why so many? Because dementia doesn’t just touch the lives of the patients themselves. Informal carers – such as family, friends and neighbours – spend somewhere in the region of 80 hours per week providing care for their loved ones.
But the relationships between patients and their carers, as well as the individual needs of both, are seldom a primary consideration in the development of healthcare systems.
In the same way that design techniques help manufacturers to create better products for their customers, applying the same methodology to services can result in greater customer satisfaction and improved functionality.
Managed by Deborah Szebeko and public service design firm thinkpublic, Alzheimer100 was a project that took a design-led approach to the problems experienced by people with dementia.
By treating care as an issue of time and communication, rather than simply a matter of improved technology and drugs, Alzheimer100 sought to identify practical steps to improve daily life for patients and their carers.
The aim of the project was not to develop a working service, but to use design research and prototyping techniques to discover new opportunities for the future of healthcare provision.
'We’re trying to change the way that organisations work with their users. We want every decision to be based on the experiences of the people that use and provide the service. It’s about using design to make it easier for people to do the things they care about,' says Szebeko.
From the outset, Szebeko, Ivo Gormley and the rest of the thinkpublic team put the personal experiences of people affected by dementia at the heart of the project. For a public service design consultancy such as thinkpublic, the aim is to co-create improvements or new systems by establishing a dialogue between service users and service providers – in this case patients, carers and local healthcare professionals.
Storytelling
Patients and carers were encouraged to contribute their thoughts and experiences to the project through video diaries, photographs, journals and web logs.
To maximise the amount of material collected in the time available, the designers also taught participants how to operate the video and recording equipment themselves.
‘Sharing skills is essential to the way that we work,’ explains Ivo Gormley. ‘If organisations and services are going to develop efficiently they must make the best use of their skills.’
The stories captured by the design team formed part of a large-scale survey of people living with the effects of dementia in the North East, the results of which were shared and discussed at a series of workshops.
Workshops
The Alzheimer100 team organised a series of workshops which gave patients, carers, designers, volunteers and health professionals the opportunity to listen to each other’s stories, discuss the issues raised and vote on which challenges were most important to them.
From these activities emerged a long list of common challenges, from which the team identified five key issues:
- Difficulty in navigating the wide array of support services
- The long hours worked by carers on their own and without support
- Lack of public awareness and the stigma attached to the subject
- Social isolation, both of people with dementia and their carers
- The tendency of carers and services to be over-protective of people with dementia
The Alzheimer100 project sought to address these issues by developing four proposals for possible improvements.
Case studies
Based on the testimonials of patients living with the effects of dementia, the design team produced a series of case studies to illustrate some of the problems an improved health service would need to address.
Johnny, 73
A former sailor and widower whose son lives abroad.
‘I miss my wife so much. I didn’t realise how much I relied on her. Luckily I now have a volunteer who attaches notes to household objects to remind me about appointments and to prompt me to take my medication. I have also been introduced to a volunteer service that sends people to visit and check that I am well.’
How can Johnny make sure he is taking advantage of all he support services available to him?
After identifying some of the key challenges faced by people with dementia, their carers and the healthcare professionals who look after them, the Alzheimer100 service design team began working on ways in which to improve the existing network of health services.
The result was four central ideas, each one designed to tackle one of the key issues that emerged from the work conducted with patients and carers. Some of the suggestions were entirely new, while others were inspired by the results of existing schemes and initiatives.
Support
Issue: Difficulty in navigating the wide array of existing support services
Proposal: Dementia Signposting Service
A key support officer would ensure that patients and carers are made fully aware of all the support services and information available to them. This system would help prevent people from feeling overwhelmed by the sheer complexity of the health service.
Sharing
Issue: The long hours worked by carers on their own and without support
Proposal: A volunteer mentoring system for carers
Spreading the responsibility for care to more than one person reduces stress for individual carers. A volunteer mentoring scheme would allow volunteers to share duties such as shopping, social visits, bill-paying and home repairs. A similar scheme aimed at mentors, and those they advise, from the North of England Refugee Service has already been set up by TimeBank, a national charity that works to inspire people to volunteer in their local communities, so helping businesses and charitable organisations to operate more effectively.
Talking
Issue: lack of public awareness and the stigma attached to the subject
Proposal: Dementia Café
In order to break down social stigmas, dementia needs to be spoken about openly in the community. The designers recognised that people with dementia need to be able to meet other people in a social space where they can talk and have fun. Further research found that a prototype solution to this need already exists in the form of the Dementia Café, run by volunteers in North East England. The design team proposed an extension of the café service to provide safe and informal environments for people with dementia.
Freedom
Issue: Social isolation, both of people with dementia and their carers
Proposal: Wandering Path
Safe wandering can be of great benefit to people with dementia. Unfortunately many care homes are not equipped to accommodate this kind of activity. Equal Arts, an arts foundation targeted at older people, plans to create a series of Wandering Paths through the grounds of Shadon house, a dementia resource centre in Gateshead. The design team worked with Shadon house to design full plans for a safe-wandering garden including raised flowerbeds and wandering paths.
Research and prototyping
The design team for Alzheimer100 was inspired by how much people with dementia and their carers support one another. However, the storytelling exercises, workshops and conversations initiated by Deborah Szebeko and thinkpublic revealed the need for improvements to existing services.
The designers applied service design techniques to identify possible future improvements within health services in the region. The kind of user research and prototyping they used are key aspects of any design process, from creating public services to developing new products – they help ensure that the ideas generated are based on real needs and experiences.
The four proposals delivered at the end of the project’s initial phase will require further development before they become fully operational. However, thinkpublic’s involvement in Alzheimer100 illustrates the way that design-led thinking can create new opportunities to improve people’s lives in practical ways.
Since 2007
The research done by the Dott team on Alzheimer 100 came shortly before a National Dementia Strategy was published in February 2009.
The Alzheimer's Society was already developing the proposals for services that came from Dott07 into a new Dementia Advisors service which launched in July 2009. Dementia Advisors are now working in 22 sites across the UK to provide local information to dementia sufferers and their carers.
The Alzheimer's Society continues to work with design agency thinkpublic to do some more work for them on how to develop a database of local services and deliver it to users – a tool for recording, storing and accessing local information.
Where next?
The Alzheimer’s Society is the UK’s leading care and research charity for people with dementia. To find out more, visit www.alzheimers.org.uk
Find out more about design agency Thinkpublic at http://thinkpublic.com
TimeBank successfully encourages thousands of people to get involved in its schemes by creating new, flexible and engaging ways for people to volunteer. Vsit www.timebank.org.uk to find out more about its work with UK charities and local businesses.
Dott07 was a year-long series of design projects run by the Design Council and the regional development agency One NorthEast to involve local people in exploring how design can improve everyday life. www.dott07.com
