Ireland Launches National Dementia Registry to Improve Patient Care and Service Planning
Ireland launches National Dementia Registry to improve care quality and service planning. HSE commissions 3-year project to collect comprehensive data on diagnosis and support.
The Irish Government has announced the commencement of a National Dementia Registry, designed to map services, identify needs and ensure equitable access to dementia care across the country.
Minister for Older People and Housing, Kieran O'Donnell TD, made the announcement at a Memory Assessment Services Symposium at Trinity College Dublin, revealing that the HSE has commissioned the National Centre for Clinical Audit (NOCA) to develop, implement and maintain the new registry.
The registry forms part of the Programme for Government's commitment to improving dementia services and will support the implementation of the HSE Dementia Model of Care. Since 2021, the Government has invested €19 million in new dementia memory assessment services and community supports for people with dementia.
"We want to implement the HSE Dementia Model of Care so that everyone with dementia can receive a timely diagnosis and post-diagnostic supports that enable them and their families to live as well as possible," Minister O'Donnell said. "The National Dementia Registry will support the delivery of the Model of Care and I am delighted that the development phase has begun."
The registry will collect comprehensive data on various aspects of dementia care, including when and where patients are diagnosed, the type of dementia they have, what post-diagnostic and community supports they receive, their medications and quality of life measures. This information will be invaluable for service planning and will offer opportunities for research into improving care for people living with dementia and their families.
Pat Healy, HSE National Director for National Services and Schemes, emphasised that the registry will be "an important tool for the HSE to ensure that investment in diagnostic and community-based services is equitable and is making a difference to the care of people with dementia."
The registry will be developed over approximately three years, with the initial phase collecting data from dementia diagnostic services, including Memory Assessment and Support Services, Regional Specialist Memory Clinics, and the National Intellectual Disability Memory Service.
NOCA brings extensive experience to the project, currently operating several successful audits and registries including the Irish Hip Fracture Database, the Irish National Audit of Stroke, and the Irish Heart Attack Audit, which have already helped drive improvements in care.
Dr Seán O'Dowd, Clinical Lead for National Dementia Services, noted that the registry will provide "invaluable data" to support both National Dementia Services and Health Regions in planning service delivery whilst offering "exciting opportunities for research on many aspects of dementia care."
The registry aims to improve patient care quality and clinical outcomes, provide data for service planning, feed into policy development, and facilitate research. Over time, it will be integrated with the European Health Data Space Regulation and the electronic healthcare record system to avoid duplication and enrich the dataset.
A preliminary scoping exercise led by Dr Louise Hopper, commissioned using dormant accounts funding secured through the Department of Health, will inform the design and implementation of the National Dementia Registry.
