Why did we do this?
There are 850,000 people with dementia in the UK, and this is expected to increase to over 1 million by 2025, according to figures from the Alzheimer's Society. At present, there is no cure for any type of dementia, and research into prevention, care, and cure is making slow progress. One of the barriers is the high cost of conducting research at scale.
To address this, we surmised that a citizen science platform, which connected researchers with people affected by dementia, could offer a low-cost alternative; 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.
What did we do?
At the pilot stage of the programme, we worked with partners to develop two apps that people affected by dementia could use to enjoy activities - such as listening to music or creating a digital life story book - and to complete wellbeing surveys. The data the apps produced was intended to help researchers understand care interventions and produce evidence-based recommendations. To do this, we needed innovative approaches to accessible interface design, digital consent processes and data models, and to engage the community.
Over 12 months we worked with people affected by dementia to iteratively design the two apps, which incorporated:
An activity - creating a life story book or personal playlist
An informed consent framework, so that users could give their consent to participate in research experiments
Surveys that captured data about the user's wellbeing for research purposes
We worked with partners such as Join Dementia Research and the Alzheimer’s Society, to recruit people affected by dementia to use the pilot apps to take part in a research experiment.
Over 600 people signed up to use the apps, and 130 of these went on to consent to take part in the experiment. Our researchers are now reviewing the data and, later in 2017, will publish academic papers to share the results.
The initiative was launched by Nesta’s Health Lab, which is committed to exploring how innovative digital technologies can improve and empower people to take a more active role in their health.
Using apps as the medium bridges the divide between the everyday experiences of those living with dementia and those responsible for the provision of care or discovery of cures.
Our partners for the first two pilot Dementia Citizens apps were:
Book of You CIC and Bangor University: Using the Book of You app people can create a digital life storybook - a collection of photos, words and audio recordings that reflect important aspects of a person’s life.
Playlist for Life and Glasgow Caledonian University: Using the Playlist for Life app people can create and listen to a personal playlist - a collection of music that has meaning for the listener.
Dementia Citizens was supported by the Department of Health, Alzheimer's Society and Alzheimer's Research UK.