Aim, objectives and scope of the Irish Dementia Registry
Aim and objectives
The aim of the Irish Dementia Registry is to systematically collect, analyse, and utilise comprehensive data to
Improve the quality of care and enhance outcomes
Inform service planning and policy development
Support research for people living with dementia in Ireland.
| Objectives |
|---|
| Monitor and improve timely access to appropriate diagnostic assessment for cognitive impairment. |
| Evaluate the accuracy of diagnosis by capturing diagnostic outcomes, including disease subtype, and assessing the completeness and quality of diagnostic evaluation in line with evidence-based practice. |
| Monitor pharmacological treatment use and safety in people with cognitive impairment due to a neurodegenerative disorder. |
| Monitor post diagnostic support & care for people with cognitive impairment due to a neurodegenerative disorder to identify service variation and inform service improvement. |
| Provide high-quality data that fosters continuous learning from implementation of ‘Model of Care for Dementia in Ireland’1 and relevant evidence-based guidelines. |
| Monitor progression, using the experiences and outcomes of people with cognitive impairment and their carers2, to inform service development and strengthen public understanding of dementia. |
| Provide high-quality, standardised data to support epidemiological analysis, health-services improvement, public health planning, policy, and research. |
Scope
| Scope Category | Inclusion Criteria |
|---|---|
| Target population | Adults over the age of 18 diagnosed made by qualified health professionals. |
| Health Condition Criteria | With any form of progressive neurodegenerative dementia including; • Alzheimer’s disease, Lewy Body disease, Frontotemporal dementia, Vascular cognitive impairment, other neurodegenerative dementias, and/or a combination of the above And at least • Mild Cognitive Impairment due to one of the above. |
| Geography | Across the health system in the Republic of Ireland. |
| Health and social care service provider | Public and Private health and social care providers across primary-care, outpatient and community specialist services, and long-term care settings. This includes but is not necessarily limited to GPs; Hospital Outpatient Clinics; Community specialist clinics (below) and long-term care facilities. Community Specialist Clinics include the following: • Integrated Care: Services provided by Integrated Care Programme for Older People (ICPOP) • Cognitive & Memory Services: Memory Assessment services this includes: Regional Specialist Memory Centre (RSMC), Memory Assessment Support Services (MASS), Long standing clinics (pre RSMC and MASS), National Intellectual Disability services as well others specialist services. • Other Services: This includes Psychiatry of Old Age, Geriatric Medicine and Neurology. In-patient hospital settings will not be the primary focus of the Irish Dementia Registry. |
| Data capture | The model will capture longitudinal data on reported outcomes from people living with dementia and their carers In line with the Digital for Care 2030 strategic plan to modernise Ireland’s health and social care system, data capture will be supported though standarised, interoperable digital health records, complemented by appropriate manual data entry where required. |
| Scope Category | Exclusion Criteria |
|---|---|
| Target population | People without a clinical diagnosis of a progressive neurodegenerative disorder. |
| Geography | Outside the health system of the Republic of Ireland. |