Across the UK there are 850,000 people with dementia, a number expected to increase to over 1 million by 2025. People who live with dementia show remarkable resilience. Their daily lives are still filled with personal stories, relationships and meaning. But with an aging population and no known cure, dementia is a challenge not just for those who face it every day, but for the healthcare system as a whole.
There is a need for more research on dementia, and for people who live with dementia to have a strong voice in that work. Dementia Citizens is a citizen science platform for dementia research that aims to address this need. We partnered with Nesta Health Lab and Department of Health to help define the initial focus of Dementia Citizens, and to then design, research and build a proof of concept.
Through the development of the proof of concept we wanted to answer some questions:
Dementia Citizens was a direct response to the prime minister’s challenge on dementia 2020, a nationwide initiative to support scientific advances in dementia. Part of this initiative was a call for breakthrough research from ‘citizen scientists’. The Department of Health brought us in to help them define what citizen science could look life for dementia, and to guide the Steering Committee along this process.
At its core, citizen science is where members of the public take part in scientific research. But this can take many different forms. It can range from citizens who run software on their computers, to citizens who share data and shape research questions with scientists. In the context of dementia, we identified a number of communities who could be involved, such as healthcare professionals, carers, and people with dementia themselves. We also recognised that citizen science could help improve dementia prevention, care or cure.
To establish the best approach, we created a blueprint of a platform for citizen science in dementia. We shared it with academic researchers across the UK in a series of conversations. This led us to propose a citizen science platform with a focus on research on dementia care in the informal care environment. We brought our ideas to the Steering Committee across the process, and led the group in collaborative decision-making at each stage. The outcome was the concept for Dementia Citizens with a shortlist of academic partners.
Dementia Citizens is a platform that connects people affected by dementia with researchers. People with dementia and their carers can go to the Dementia Citizens website and sign up to take part. Once they’ve signed up they can download a Dementia Citizens app. Each app is a research study that tests a different hypothesis about dementia care. For example, the study app Playlist for Life tests the hypothesis that playing personally meaningful music improves wellbeing and quality of life for people with dementia and their carers. In this way, each study app lets people with dementia and their carers try out an activity and track its impact on their lives.
With this approach Dementia Citizens aims to:
For the Dementia Citizens proof of concept we created two apps: Book of You and Playlist for Life. We invited people with dementia and carers to use early versions of the apps, and then travelled across the UK to visit them in their homes and ask about their experience. Over the course of the project, we spoke to people young and older, with different kinds of dementia, who lived on their own or with others. These conversations and observations informed each phase of the design and development.
The research showed us how Dementia Citizens could be a source of joy and meaning, but to do so people had to be able to interact on their own terms. We took care to be dementia friendly in the language, the images we used, and the mode of interaction. For example, some people with dementia were confident with technology and happy to use the apps independently. Others took part with the support of their carer, whilst others felt that with guidance they could learn over time. In response to this, the apps are designed to be used by a person with dementia on their own, or together with a loved one.
The Book of You study app is a collaboration between charity Book of You and Bangor University. It tests the hypothesis that creating a collection of personal stories improves the quality of life and wellbeing of people with dementia and their carers.
In the app people can create a digital story book about their life. Each page in their book invites them to upload or take a picture and add an audio recording of their story. As people scroll through their pages, they can then listen to their recordings, edit them live, and share memories with their loved ones.
The Playlist for Life study app is a collaboration between charity Playlist for Life and Glasgow Caledonian University. It tests the hypothesis that finding and listening to personally meaningful music improves the quality of life and wellbeing of people with dementia and their carers.
The app guides people towards identifying and making playlists of personally meaningful music. It involves a series of questions and prompts to help people remember which songs are particularly resonant for them. People can listen to a song, add it to their list, and tag it according to the mood it evokes and the kinds of activities they feel it accompanies.
We found that simply translating traditional research processes, such as consent or questionnaires, into a smartphone format, isn’t enough from the perspective of people affected by dementia. We had to adjust the language used so that it was self-explanatory and jargon-free. And we had to introduce each research process so that people affected by dementia understood its purpose and what it would involve.
By making sure that every element of the app was as dementia friendly as can be, they became accessible to people with dementia and their carers. For example, we made sure that the language and images used were direct, and not abstract, and allowed people to take part at their own pace. In doing so, we found countless examples that contradict assumptions about people with dementia and digital technology.
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