There are 850,000 people with dementia in the UK, and this is expected to increase to over 1 million by 2025*. Not only is there is no cure, but we know much less than we would like about how to care for people with dementia. We need to learn faster. At the beginning of August 2016 Nesta launched Dementia Citizens, a platform that brings together researchers and those affected by dementia to help find ways to improve care.
Nesta believes that digital technology has massive potential to help achieve this. There are smartphones and wearable devices in most homes in Britain, capable of gathering huge amounts data that could be of very valuable to researchers. Also the cognitive stimulation that helps people with dementia - such as music, reminiscence, art and so on - can be delivered digitally. Finally, they are believers in the generosity of the public, and believe that research participation can be even higher than it is now.
Bringing these together, Nesta has partnered with the Department of Health, Alzheimer's Research UK, and Alzheimer’s Society to launch this initiative. Dementia Citizens is a platform that brings together researchers and those affected by dementia to help find ways to improve care. The idea is to team up with researchers to build engaging and evidence based apps that:
- Support and improve the quality of life of the person with dementia, and their relationship with those around them.
- Generate data that researchers can use, and which improves our understanding of care for dementia.
- Are safe and ethical.
Nesta has launched beta versions of their first two apps on iOS, focused on music and reminiscence. Playlist for Life, backed by Glasgow Caledonian University, helps people with dementia and their carers, find music that has meaning. Book of You, backed by Bangor University, helps people assemble images, text and sound about meaningful places and events. Both of these can support not just the person with dementia, but, also their relationship with the people around them.
Nesta are hoping to show three things over this beta phase:
- That people with dementia and their carers are keen to participate in digital research.
- That they can comfortably use the technology.
- And that quality, publishable research can result from this.
Pound for pound, this is one of Nesta’s more ambitious projects, but has seen a lot of testing and work over the last 9 months - see this blog by development partners Ctrl group - and believe they are well on the way to showing the potential for this mode of research.
Nesta wants to go further in future: Greater co-production with people affected by dementia, Android as well as iOS, more partnerships with researchers, and a collaborative effort to share and improve the code and designs that make this sort of research possible. So please continue to watch this space. And if you’re a person with dementia, or caring for one, and would like to participate in one of Nesta's research studies, please sign up at www.dementiacitizens.org