Lessons shared from pilot apps for dementia sufferers
Nesta’s ‘Dementia Citizens’ app development project is helping researchers build better data on dementia.
Charity innovation foundation Nesta has shared the lessons learnt from two pilot apps for people affected by dementia.
Using apps on smartphones and tablets, people with dementia were able to enjoy activities while also contributing to dementia research.
The ‘Dementia Citizens‘ project was produced by Nesta and supported by the Department of Health, Alzheimer’s Society and Alzheimer’s Research UK, with researchers from Bangor University and Glasgow Caledonian University.
Over 12 months, they worked with people affected by dementia to design two apps. These incorporated an activity such as creating a life story book or personal playlist, an informed consent framework so that users could give consent to participate in the research experiments, and surveys that captured data about the user’s wellbeing for research purposes.
To do this, they worked with partners to develop the two apps. For this they needed innovative approaches to accessible interface design, digital consent processes and data models, and to engage the community.
The data the apps produced was intended to help researchers understand care interventions and produce evidence-based recommendations.
The organisation thought that a ‘citizen science platform’ would be a good way to get around the high cost of conducting research at scale, providing researchers with easy access to open datasets and digital toolkits.
“We suspected that the valuable everyday data generated by the citizen scientists, people with dementia, and their carers, might help researchers spot patterns, learn more about caring for people with dementia, and help them produce evidence-based recommendations,” said Nesta.
“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.”
The project’s main goals were to demonstrate interest in projects of this kind, create technology that is easy to use, find a way to digitally consent people with dementia and their carers, and produce academic quality research.
The pilot project was a partial success – over 600 people signed up to use the apps, and 130 of these went on to consent to take part in the experiment.
People also didn’t use the app as regularly as was hoped. 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.
“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,” said Nesta.
The team also learnt about the challenges of tailoring research for a digital context, when dementia research has traditionally been face-to-face.
When using the apps, some people felt that the digital platform was blunt way to capture the richness of someone’s experience, and people wanted to be able to give the kind of detail and nuances that is possible in conversation with a researcher.
The technology built during the project has been further developed to be released as an app for anyone to download and use, with a publication in a peer reviewed science journal due later this year.
Nesta has also published the code used for the Dementia Citizens apps for others to benefit from.