Developing a Dementia Dataset


Developing a Model for the National Dementia Registry



To address a dementia information gap and to explore the potential of a model for a national dementia registry, a two-year study was commissioned by the NDO to develop a Model for a National Dementia Registry. This study, funded by Dormant Accounts through the Department of Health (DoH) was led by Dr. Louise Hopper, School of Psychology at Dublin City University.

The final report from the project (accessible below) shows that a dementia registry is a feasible way to systematically collect and analyse data on dementia in Ireland; helping to shape a responsive and fit-for-purpose system. A timely output from the project is the identification of the dementia minimum data set, where consensus was reached on what minimum data should be collected to inform standardisation of services across the country and enable comparisons across care setting nationally and internationally.

The project was informed by a national Steering Group and Special Interest Group (SIG) which included expert inputs, lived experience insights, and general oversight for the duration of the project. In addition to regular consultation with experts across all relevant domains, the wider environment within which the National Dementia Registry would operate was also explored.

Throughout the development of the dataset, there was a focus on future-proofing and interoperability with a view to potential linkages to data sources over time.

Agreeing a minimum dataset for the registry does itself support standardisation and will assist memory clinics, hospitals, and GPs to collect information and report dementia efficiently.

In addition, having a minimum data will allow data comparison nationally and internationally, by centre, geographical location, service use, type of dementia and other variables within the dataset as needed.

Development of a Model for the National Dementia Registry

Development of a Model for the National Dementia Registry Summary

Dementia Minimum Dataset

The Dementia Minimum Dataset is available to view in the downloads below. If you would like more information about using this dataset or plan to use it within your service please contact the National Dementia Office – or phone 057 93 18451

Further Reading