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Dementia Citizens: Learning from a citizen science platform for dementia research

Last year, we launched two pilot apps for people with dementia. The apps allowed people to enjoy an activity - making a life story book or a personal playlist - and to take part in research to explore how these digital activities may help improve the wellbeing of people affected by dementia.  

The apps came as part of our Dementia Citizens project, in which we set out to help people with dementia and their carers; producing data and research that was valid and insightful. We did this believing that digital platforms provided an opportunity to collect data at large scale allowing a new understanding of the issues.

Our goals were:

  • Show that people are interested in participating in projects of this kind, by recruiting 500 participants
  • Create technology on a smartphone that is easy to use
  • Find a way to digitally consent people with dementia and their carers, ensuring informed consent and obeying relevant ethics rules and norms
  • Produce academic quality research, hopefully for publication in a peer reviewed journal

The project achieved most of its goals. We learned a huge amount about how to design apps that are useable for this group

We worked out how to manage research consent for the group in a digital context, had it signed off by ethics committees, and are now hopeful of getting the outputs of the research into a journal this year. Plus, the technology built during the project has been further developed to be released as an app for anyone to download and use.

However, there were also some areas where we fell short of what we wanted. 

Key lessons from the project:

  • Recruitment was more difficult that we anticipated, achieving a bit less than half the 500 we were aiming for. Our user research suggested an appetite for participation in this type of research and we had fantastic partners ( including the Alzheimer’s Society, Alzheimer’s Research UK, the Dementia Engagement and Empowerment Project and Join Dementia Research). However recruitment for dementia research is known to be relatively hard and we did not allow enough time in the project to do it effectively. A new generation of dementia apps has shown that the users are out there, but it can take a long time to build up a significant user base.

  • Despite lots of user engagement at the design phase, people didn’t find the apps as ‘sticky’ as we’d hoped, with people not using the app as regularly as we had hoped. With hindsight, we asked too much of people initially - allowing people to use the app before signing up for research would have provided more immediate appeal and benefit for the user, before asking them to give their time by providing their details, consenting to research and completing baseline surveys.

  • Dementia research carried out face-to-face is well-established, with protocols for aspects such as metrics, consent and language. Digital dementia research is new and the existing practices translate to digital with varying degrees of success. The current validated wellbeing questionnaires used for face-to-face dementia research were difficult to translate well to the apps. During in person interviews, researchers can tailor questions based on their knowledge of the participants’ situation - for example, skipping questions about spouses or children where a participant doesn’t have these - that was more difficult in a digital context. Similarly, when using the apps, some people felt frustrated that they could only give numerical responses. They felt that these were a blunt way to capture the richness of someone’s experience, and people wanted to be able to give the detail and nuances to a number that is possible in conversation with a researcher.  

We remain convinced by the potential of digital models of research. We have published the code used for the Dementia Citizens apps for others to benefit from. Our charity partners, Book of You and Playlist for Life, each launched an app for people affected by dementia. While the former is no longer available, you can find the Playlist for Life app on the App Store. Our research partners, Bangor University and Glasgow Caledonian University, will also be publishing their results, including the Dementia Citizens study, later this year.

Dementia Citizens has been an ambitious project that aimed to harness the potential of digital and data collection. Thanks to those involved - our project partners and all of those affected by dementia, who generously gave up their time to test the app designs or participate in research - we have learned a huge amount and been able to make progress in this important area.

Author

John Loder

John Loder

John Loder

Head of Strategy

John works in the Health Lab. He has a particular interest in the potential of data to improve healthcare, and leads Nesta's digital health work, such as Dementia Citizens He co-wrot...

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