Trail-blazing research secures Longitude Prize on Dementia

A collaborative research initiative developed by the Northern Health and Social Care Trust in partnership with Ulster University is getting under way after securing funding from the prestigious Longitude Prize on Dementia.

Known as Clear-AI Dementia Care, it aims to revolutionise our understanding of changes in behaviour in dementia, providing a basis to enhance quality of care and overall quality of life, for those living with dementia carers.

One of only 24 successful projects from 175 worldwide applications, it received a share of £1.9m from the Longitude Prize which is funded by Alzheimer’s Society and Innovate UK, and delivered by Challenge Works.

The ground-breaking research is being conducted in partnership with AgeNI, Digital Health and Care NI and the Public Health Agency.

In the Northern Trust, the project has been spearheaded by Dr Frances Duffy, a consultant clinical psychologist who has been working in dementia care for over 15 years.

Conference

Dr Duffy recently attended the Alzheimer’s Disease International Conference in Poland, where she presented initial findings from the study.

She said: “There was great interest in the potential of this innovation to improve the lives of people living with dementia and their carers.

“We are very pleased that the pilot stage of the project is now underway, and initial data is already pointing towards promising results.  It will help us to better understand how the person with dementia spends their day and the events and activities that both increase, and reduce, distress.

“The patterns of changing stress are shared with carers who can provide further insight and this is also really helpful for the carers as it helps them to better understand the experience of the person they support.”

Interpreting

Explaining more about the Clear-AI concept, Dr Duffy said: “We are working on an artificial intelligence powered platform that interprets data from a range of connected smart sensors, apps and devices to model the daily routines of the person with dementia.

“It’s important to remember that people living with a dementia continue to have the same needs as all of us.  But as their condition progresses, the world can become more confusing and they have difficulty meeting all of their needs independently or telling others what they want or need.

“When this happens, they can behave in ways that carers don’t always understand which can lead to increased distress and stress for both the person with dementia and their carers.

“Analysing the data and training the AI model enables the platform to identify the types of events and activities that precede episodes of distress. Using these models, and with Clear Dementia Care’s assessment as baseline, we can initiate interventions into daily schedules that reduce or mitigate distress where it is likely to arise.

“The goal is to reduce carer burden and enable those with dementia to live at home with as much independence as possible for as long as possible.”

Endorsement

Reflecting on the impact of the Longitude endorsement, Frances said: “Being recognised in this way has enabled us to continue to innovate in our commitment for excellence in dementia care, and we believe this could be a game-changer for people living with dementia and their families.

“It has allowed us to bring together the people we need to progress this further, including people living with a dementia, carers, dementia care specialists and colleagues from research, charities and digital health care. This co-design approach ensures that we are led by stakeholders’ needs, which is essential for success.

“To be selected alongside a global field of pioneering developers, researchers and innovators has been hugely motivating for everyone involved and we are very grateful for the opportunity.”

Ethical use of AI

Speaking about the ethical use of AI in the project, Principal Investigator Joan Condell, Professor of Intelligent Technologies at Ulster University said: “At the Human Centred Computing Group at Ulster University, we specialise in applying Artificial Intelligence to improve the lives of those around us, and are committed to implementing AI in a responsible and ethical manner.

“During pilot on-boarding, we focus on transparency and informed consent by providing detailed consent forms and personalised explanations of the study to people living with dementia and their carers. We uphold ourselves to stringent data security measures, ensuring anonymity and full compliance with GDPR regulations.

“Furthermore, our approach to data modelling places a strong emphasis on bias mitigation, safeguarding the integrity of our AI interventions. By combining cutting-edge technology with ethical considerations, we strive for effective AI integration in dementia care that upholds the highest standards of ethics and compassion.”

Collectively, the Longitude Prize on Dementia is worth £4m, and was established to drive the creation of personalised, technology-based tools that are co-created with people who are living with the early stages of dementia.

The overall aim is to enhance their health and wellbeing by ensuring they can live safely and independently at home for as long as possible.

16th May 2024