Better standards of health care mean that people are living longer. This also means that the number of people living with dementia is increasing. To offer effective support to people with dementia and their carers we need to know the number of people who are assessed for dementia, how they access a diagnosis, what services are offered before and after assessment and how accessible and helpful these services are. To answer these and the many other important questions associated with a person’s journey with dementia we need to collect the appropriate data.
The Dementia Analytics Research User Group (DARUG) was set up in March 2018 to enable commissioners, health professionals, researchers, academics, voluntary and community representatives, people living with dementia and carers to come together once a month to discuss and share information about dementia. Over time we have built a community of practice where collaborations have developed as a consequence of the shared interest and motivation to improve the quality of life for people living with dementia and their carers.
A number of data analytics projects, aimed at improving our understanding of dementia in Northern Ireland have received funding under the Dementia eHealth and Data Analytics Pathfinder Programme. This programme is part funded by the Northern Ireland Executive Office, Atlantic Philanthropies and the Department of Health. The programme focuses on using data to enable better understanding of the needs of people with dementia and their carers to inform better services and support and help with planning to meet predicted future needs. The call for funding solicited proposals consistent with the aims of the Northern Ireland Regional Dementia Care Pathway (Health and Social Care Northern Ireland, 2018)
The 11 projects that have been successfully awarded funding through the eHealth and Data Analytics Dementia Pathfinder Programme are summarised below in the URL below:
The DARUG programme implements agile methodology and the project leads update on progress at regular sprints. This enables feeback from the community and affords the opportunity to shape the future direction of the project. Personal and Public Involvement (PPI) was built into the process from the initial stages of the project proposal evaluation and there is regular ongoing PPI engagement to help to shape the direction of the project.
The concept of DARUG has been overwhelmingly positive. In the first instance people vote with their feet and there has been consistent attendance and engagement from the group throughout the past 21 months. Some quotes from attendees about their experience with DARUG.
“DARUG is unique. There is no other forum that has the range of disciplines and services coming together to discuss data in dementia. This range of ideas improves our knowledge and understanding of dementia data and what we can do with this data.”
“PPI and the voice of people with dementia and carers shape DARUGs’ priorities and work.”
The outcomes of the projects are now emerging and the results are being presented at local, national and international conferences, together with papers accepted and submitted for publication in peer reviewed journals.