Commencement of National Dementia Registry

The Minister for Older People and Housing Kieran O’Donnell has announced the commencement of implementation of a National Dementia Registry for Ireland.

The announcement was made at the Memory Assessment Services Symposium in Trinity College Dublin on Friday. The Programme for Government commits to developing a National Dementia Registry to map services, identify need and plan the delivery of equitable access to services.

"I am pleased to announce that the HSE, through National Dementia Services, the Enhanced Community Care Programme and the National Centre for Clinical Audit, has commissioned the National Centre for Clinical Audit (NOCA) to develop, implement and maintain the Registry," said the minister. "NOCA has extensive experience in clinical audit and registries and I am confident that this new Registry will assist us to improve dementia care quality, address service gaps, and plan services for the increasing number of people with dementia”.

National Dementia Services (formerly the National Dementia Office) was established in 2015 to oversee the implementation of the National Dementia Strategy (2014).

National Dementia Services reports into and aligns with the HSE’s Enhanced Community Care (ECC) programme. More recently, National Dementia Services has led on the implementation of the 37 targets and recommendations outlined in the Model of Care for Dementia in Ireland which was published in 2023. These targets cover Public Awareness, Assessment, Diagnosis, Communicating a Diagnosis, Care Planning and Post Diagnostic Support.

The HSE's National Centre for Clinical Audit (NCCA) has commissioned the National Office for Clinical Audit (NOCA) to develop and maintain the National Dementia Registry. The Registry will be developed over a period of approximately three years and in its initial phase will collect data from dementia diagnostic services, including Memory Assessment and Support Services, Regional Specialist Memory Clinics, the National Intellectual Disability Memory Service and a variety of other services that diagnose people with dementia.

A preliminary scoping exercise and report on the National Dementia Registry was commissioned by the HSE, using dormant accounts funding secured through the Department of Health. This report, led by Dr Louise Hopper (Hopper and Bowen, 2021), will help inform further work on the design and implementation of the National Dementia Registry.

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," the minister added. "The National Dementia Registry will support the delivery of the Model of Care and I am delighted that the development phase has begun.”

Commenting on the announcement, Pat Healy, HSE National Director for National Services and Schemes, noted: “As we continue our journey towards the delivery of Sláintecare, by providing the right care, at the right time, in the right place, delivered by the right people, the National Dementia 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”.

Dr. Seán O’Dowd, Clinical Lead for National Dementia Services, also welcomed the commencement of the Registry, noting that: “The National Dementia Registry will give us invaluable data on many aspects of the care of people with dementia, including when and where they are diagnosed, what type of dementia they have, what post-diagnostic and community supports they are getting, what medications they are taking and what their quality of life is. As well as supporting National Dementia Services and the Health Regions to plan the delivery of services, the National Dementia Registry will offer exciting opportunities for research on many aspects of dementia care and how we can improve the health and wellbeing of people living with dementia and their families.”

Majella Daly, Assistant National Director, National Centre for Clinical Audit, HSE , meanwhile said: “The National Centre for Clinical Audit aims to improve the development of an end-to-end process for clinical audit and we are delighted to see this important piece of work progressing. NOCA’s work on many Audits and Registries like the Irish Hip Fracture Database, the Irish National Audit of Stroke and the Irish Heart Attack Audit has already helped to drive improvements in care, and I am confident that the National Dementia Registry can help drive similar improvements in the diagnosis and care of people with dementia.”