In 2007, the Alzheimer’s Society worked with design agency thinkpublic on a project which was part of Designs of the time '07 (Dott07), 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.
The project, called Alzheimer 100, explored how service design techniques could help people with Alzheimer’s, and their carers, friends and family members, generate ideas for new services that could help them in practical ways. thinkpublic ran workshops that involved people affected by Alzheimer’s in generating ideas for new services and they enabled people to contribute their thoughts and experiences to the project through video diaries, photographs, journals and web logs. At the end of the project, the team proposed four services that would help people with Alzheimer’s in the North East:
- A volunteer mentoring system for carers.
- A Dementia Signposting Service to point people in the direction of existing support services.
- A Dementia Café where people with dementia could meet other people in a social space where they can talk and have fun.
- A series of Wandering Paths through a safely designed garden.
The Alzheimer’s Society has continued to work with thinkpublic since Dott 07 ended. Immediately, they developed a blueprint for a Dementia Adviser service that would provide people who’d been diagnosed with Alzheimer’s with access to an adviser who could help them use a range of existing support services.
This work was conducted shortly before a National Dementia Strategy (NDS) was due to be published. Mary Garvey, Director of Service Development at Alzheimer’s Society explains that The Society submitted some suggestions to the NDS that built on ideas generated during Dott 07 and continued by ongoing work with thinkpublic: “The National Dementia Strategy asked people to give feedback, and we organised a huge consultation because, before we submitted our thoughts we wanted to engage with more people with dementia. What people were saying they needed was very consistent with what they said during Dott. And what we submitted to the National Dementia Strategy was very much aligned to what came out of our Dott project. In fact, we decided that we would attach information about Dott 07 to our submission to the dementia strategy.
'We knew a dementia advisory service was likely to feature in the National Dementia Strategy so we called in thinkpublic again to help us find out what information people with dementia wanted and how they wanted it delivered. We were willing to put some of our own money in to this because we believed we were in quite a strong position to help deliver dementia services if they were recommended by the NDS. We wanted to strengthen our position even further, and the work we did with thinkpublic help us do that.'
In fact, when the National Dementia Strategy was published in February 2009 by the Department of Health (DoH) it included a recommendation that dementia adviser services be established across the UK. After issuing an invitation to tender for running dementia adviser services in 22 sites across the UK, the DoH selected the Alzheimer’s Society to deliver services in 16 of those areas. Garvey thinks this is down to the work done with thinkpublic on creating a really sound and desirable service proposition.
Mary: “This was the first service for The Society that focused on people with dementia. It was a wave of change that was happening in the society but coming in contact with thinkpublic was good timing. The skills and tools of the designers have helped us make this change.”
Where the work done during Dott 07 had been early stage design ideas generation, by continuing to work with thinkpublic, the Alzheimer’s Society has been able to move on to prototyping and testing that these ideas actually work. To do this, they needed to work with the people that would use the services created. Ian Drysdale from thinkpublic says: “What we do [service design] is still quite unknown. Engaging with service users can take more time but at the end you get what they really want. It’s about more focused insight and valuing what different people can contribute.'
Garvey says: 'People like being asked what they think. Focus on users is now embedded in the organisation. Dott 07 certainly contributed to this in a large way. It was the first time we did.'
Drysdale continues: 'Dott ended with the knowledge that there was a requirement for early stage information to be provided to people with dementia. Then we started to talk about how we would deliver that.'
During what Drysdale describes as: 'an intense four weeks of iterations' thinkpublic worked with the West Kent and Birmingham branches of The Society to try out ideas for what should make up a dementia adviser service.
'A lot of design is about interpreting experience,' he says. 'But with people with dementia they can’t remember their experiences. So we had to move and iterate fast. We tried to make the sessions experiential rather than reflective. So we visited places with people who have dementia rather than ask them to remember times they’ve found things difficult.'
During these four weeks it emerged that, as well as training and employing dementia advisers, it would be necessary to develop some tools that would support them. There was also a need for some sort of written record, because it would be useful for people with dementia, their helpers and support agencies.
'Cards, people worried about getting lost or missing up the order. Leaflets, people had too many of already. Folders felt like they could be your own,' says Drysdale.
By creating prototypes of guidebooks thinkpublic investigated:
- What content should they contain?
- How would they be produced in a system that has to reach across the UK?
- Should people with dementia play a role in producing and updating this information?
Trials of the dementia services guidebooks at three pathfinder sites revealed some changes needed to be made. 'The guidebook didn’t work. It was too complex to produce. Advisers and volunteers didn’t always have the IT skills. And they didn’t involve people with dementia in producing the guides to local services,' says Garvey. 'It needed more support. Now we have Guidebook Officers in the North and South who train the volunteers and enable them to engage with people with dementia every three months.'
The final result is, says Garvey: 'A guide that’s for people with dementia, created by people with dementia. We’re going to evaluate it in the autumn  but we have already had external interest and people wanting to buy it.'
The guide is not the only outcome to the service design project The Society has undertaken with thinkpublic, says Garvey. Starting with Dott 07, it is gradually developing how it works: 'I would not have approached designing the guide in the same way without thinkpublic and it would not have been anywhere like as effective without them. Other designers we work with are more traditional print designers. thinkpublic are a new kind of designer for us. They actually initiated working more closely with our marketing and publishing teams and I think the organisation will learn from working like that.'
There is also a legacy of using design methods at The Alzheimer’s Society. Garvey says: 'Prototyping as a method has come back to our central organisation as a way to check whether an idea is viable. People in IT use it.'
And the design methods legacy has been enabled by the close working relationship that has developed between thinkpublic and The Alzheimer’s Society says Garvey: “People had confidence in Thinkpublic, especially in Ian. At one point we felt like he was a team member he was here so much. Staff in this building don’t come in contact with people with dementia. The confidence they had in Ian and the team meant they engaged in the service design projects. They felt they were learning and they liked that fact that people with dementia were at the heart of the process and felt that co-design is a useful tool for us to keep using.
I don’t think we used the term service development three years ago. But for the past five years we have been going through a lot of development as an organisation. One thing we did for the first time was to write a service specification for the dementia advisory teams. We used words like pilot, develop and learning and are now rolling this service specification process out across all our services.'
Drysdale and Garvey can see that the small seed of service design, sown during Dott 07, is growing into national projects and both understand that the design techniques that The Society continues to use with the help of thinkpublic will enable it to personalise and develop the services it provides for specific new audiences.
Garvey says: 'The dementia adviser service is for someone who is early on in their dementia. What does this turn into if people have had dementia for five or 10 years? And where people have had their diagnosis very late they have not been taken onto this service.'
Drysdale says thinkpublic is still working with The Alzheimer’s Society because: 'Our aim is to establish the Alzheimer's Society as the leading third sector partner for local authorities wishing to implement the National Dementia Strategy.'