Learning to live better with dementia through technology: new apps piloted today connect those affected by dementia and researchers

Pooling everyday app data allows researchers to experiment fast in improving care

Few doubt the scale of the challenge posed by dementia, yet there is no cure and so accelerating research into prevention and care is crucial. Harnessing digital technology to help researchers understand and address key issues in care, the innovation foundation Nesta today announced a new initiative to connect those with dementia, and carers, with researchers. The charity is piloting two new apps - Book of You and Playlist for Life - as part of its Dementia Citizens project, and is now seeking 500 people to use the apps in a three month study.

Through the apps, people with dementia and their carers can enjoy shared activities such as listening to music or creating a digital photo story book while also completing well-being surveys. Specialist researchers can then use the everyday data produced by these activities to spot patterns, understand care interventions and produce evidence-based recommendations.

John Loder, head of strategy, Health Lab, Nesta said: “This is an ambitious project that brings two spheres of work together in a way that is urgently needed. Digitally-enabled and patient-led research like this not only contributes positively to the social and quality of life of the person living with dementia and their carers, but can provide crucial insights into improving care.”

Supported by the Department of Health, Alzheimer's Society and Alzheimer's Research UK, Dementia Citizens offers a low-cost alternative for researchers looking to conduct research at scale by providing easy access to open datasets and digital toolkits. Users of the apps during the next three months will help develop the technology and improve the user experience for people affected by dementia. 

Compatible with iOS smartphones and tablets (iPhone, iPads, iPod Touch), app development comes from research partners Bangor University and Glasgow Caledonian University. To sign up to the two apps, visit www.dementiacitizens.org.

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About Nesta

About Nesta: Nesta is the UK's innovation foundation. We help people and organisations bring great ideas to life. We do this by providing investments and grants and mobilising research, networks and skills. We are an independent charity and our work is enabled by an endowment from the National Lottery. Nesta is a registered charity in England and Wales 1144091 and Scotland SC042833

www.nesta.org.uk / @nesta_uk

For more information, contact: Kasia Murphy, Press Officer at Nesta: [email protected] /  t: +44 2074382610 m: +447929800765

Note to Editors

Dementia Citizens is an initiative from 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. Open datasets securely and anonymously gathered from 2 August 2016 (app launch date), along with digital toolkits, will be made available for researchers on the Dementia Citizens website and will be open to researchers in the field.

Partners for the first two pilot Dementia Citizens apps are:

• 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 has been informed by input from an expert Advisory Group with the following members: Lorraine Jackson, Gillian Ayling and Sara Allen (current and former Department of Health), Catherine Gallagher (volunteer), Piers Kotting (Join Dementia Research), Matthew Norton and Emily Cook (Alzheimer’s Research UK), Malayka Rahman-Amin (Alzheimer's Society), Lorelei King (carer), Alistair Burns (NHS England), Paul Wicks (Patients Like Me) and John Williams (Wellcome Trust). Dan O’Connor (Wellcome Trust) has advised as ethics consultant for Dementia Citizens. Ctrl Group has worked with Nesta as the research, design and development partners for the Dementia Citizens pilot apps.

The process of designing and developing the app has included three phases of user research, in total involving more than 40 people with dementia and carers.

Quote sheet

Matthew Norton, Head of Policy at Alzheimer’s Research UK: “Alzheimer’s Research UK is delighted to support this innovative scheme, which offers an easy way for people with dementia and their carers to take part in engaging activities and contribute to research at the same time. We know that many people would like to take part in dementia research but do not know how – projects like Dementia Citizens, alongside initiatives such as Join Dementia Research, are crucial in providing opportunities for the public to get involved in research efforts. Research is vital for improving the lives of the 850,000 people living with dementia in the UK, and this scheme is a welcome addition in the fight against the condition.”

Dr Doug Brown, Director of Research and Development at Alzheimer’s Society: “We’re delighted to be a partnering with Dementia Citizens as it is paving the way by making research studies and technology more accessible for people with dementia. This app will enable people affected by the condition to take part in reminiscence activities and, crucially, aims to develop innovative dementia care interventions by allowing them to get involved in research studies from the comfort of their own home. High quality dementia care is essential. We’ve already seen digital technologies being used by health and social care professionals to change the way that care can be delivered to people with long term conditions. We look forward to seeing how the 850,000 people living with dementia in the UK can be better supported to manage their condition using digital health solutions."

Kathy and Tom Barham, founders of Book of You CIC:  "Book of You is passionate about the benefits of life reminiscence for people with dementia - improving wellbeing, personalising care and being fun and worthwhile.  We are delighted to be able to develop and test this new App as a part of Dementia Citizens, and find out with more rigour what helps, and why. We hope to make this app available to all who could benefit as soon as possible"

Lorraine Jackson, Deputy Director, Dementia Policy at the Department of Health: “Technology and apps can bring fun and enjoyment to everyday life for people with dementia and carers. It’s great that Dementia Citizens offers these benefits for individuals and adds value with another purpose – using anonymised data to support research and improve such developments in future.”

Dr. Gianna Cassidy, music psychologist and senior lecturer in Interactive Entertainment Design, Glasgow Caledonian University: "The GCU team are delighted to be involved with Dementia Citizens, and the unique opportunity  it affords us to explore the potential of personal music and digital technology to improve the wellbeing of those living with dementia through Citizen Science. We believe ‘Playlist for Life’ the app could be a powerful tool for improving dementia care and wellbeing, helping those with dementia and their supporters identify the musical identity that connects them, exploring the past, experiencing the present, and planning for the future. Dementia Citizens presents a seminal step forward for dementia care, and we thank John Loder and his team for all their hard work.”

Sally Magnusson, founder and Chair of registered charity, Playlist for Life: “I am delighted that Playlist for Life’s app is one of the first on Nesta’s exciting Dementia Citizens platform. Personally meaningful music helped us to keep connected to my mother even as her dementia progressed. It’s wonderful that the platform will help others living with dementia be part of trying it for themselves and researching how it works.”

Professor Bob Woods, Dementia Services Development Centre Wales, Bangor University: “Research teams working in the dementia care field are excited about the potential of the Dementia Citizens platform to engage with and involve people living with dementia and their supporters in a range of research studies that could improve understanding of the condition and quality of life. Our team at Bangor University has been delighted to participate in the first wave of projects, enabling us to extend our research on life story books, which we believe could be a powerful tool to help people with dementia maintain their identity and improve communication and relationships with those assisting them. We welcome the Dementia Citizens platform as a landmark step forward in the battle to defeat dementia.”