Defining our big questions We wanted to answer some questions:

• How can we adapt traditional research to everyday smartphones or tablets?
• How can we make digital technology more accessible for people with dementia and their carers?
• Will our citizen science research be good enough to publish?

Citizen science for dementia 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 like for dementia, and to guide the steering committee along this process. Citizen science is where members of the public take part in scientific research. But this can take many different forms. It can range from people who run software on their computers to people who share data and shape research questions with scientists. In the context of dementia, we identified communities to approach, such as healthcare professionals, carers, and people with dementia themselves. To establish the best approach, we created a blueprint of a platform for citizen science in dementia, which we shared with academic researchers across the UK. This led us to propose a citizen science platform with a focus on research on dementia care in people’s own homes. We brought our ideas to the steering committee and led the group in collaborative decision-making. The outcome was the concept for Dementia Citizens with a shortlist of academic partners.

How Dementia Citizens works Dementia Citizens connects people affected by dementia with researchers. People with dementia and their carers can go to the Dementia Citizens website take part. They can download the Dementia Citizens app, which, for each individual, tests a different hypothesis about dementia care. Dementia Citizens aimed to:

• enable people living with dementia to take part in their own homes, in their own time
• give academic researchers access to a large pool of real-world data
• open up communication between people with dementia, carers and academic researchers
• generate findings to improve dementia care

Designing with the dementia community 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 that people had to be able to interact on their own terms. We took care to be dementia-friendly in our language, images, and mode of interaction. Some people were confident with technology and happy to use the apps independently. Others took part with the support of their carer or felt that with guidance they could learn over time. In response to this, we designed the apps to be used by a person with dementia on their own, or together with a loved one.

Book Of You Study 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 listen to their recordings, edit them live, and share memories with their loved ones.

Playlist For Life Study 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 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.

Our answers How can we adapt traditional research to everyday smartphones or tablets? We found that simply translating traditional research processes, such as consent or questionnaires, into a smartphone format, isn’t enough for people affected by dementia. We had to adjust the language 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. How can we make digital technology more accessible for people with dementia and their carers? We made sure that every element of the app was as dementia-friendly as possible. For example, we used direct language and images, and not abstract, and allowed people to take part at their own pace. We found countless examples that contradict assumptions about people with dementia and digital technology. Will our citizen science research be good enough to publish? The beta study is currently underway but we'll find out soon! Follow us over on Twitter or on our blog for updates.