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Dementia registry important next step in the fight against dementia
Dementia registry important next step in the fight against dementia

Dementia registry important next step in the fight against dementia

Researchers from the School of Nursing and Human Sciences work with the Alzheimers Society Ireland to introduce a National Dementia Registry

More than 2,150 deaths from dementia were recorded in Ireland last year, up from just 813 in 2007, according to the Central Statistics Office. This 165pc increase comes on the back of better recording practices of incidences of death due to dementia which is vital to adequately reflect the scale of this condition in Ireland.

The lack of joined up recording and coding of dementia diagnoses means Ireland currently does not have access to an accurate picture of the numbers of people living with the condition in Ireland so we can adequately plan treatment and care pathways for the thousands developing this condition every year. Currently, other jurisdictions such as Sweden gather comprehensive data from individuals who have been formally diagnosed with dementia. This is collected from GPs, hospitals and memory clinics.

Part of the recommendations of the National Dementia Strategy published in 2014 was to develop better recording and coding practices of dementia. Following on from this, The Alzheimer Society of Ireland today launched a study commissioned under the ASI’s expert policy series and conducted by researchers at Dublin City University, which provides much-needed information on the feasibility of developing a dementia registry which would record and code diagnoses of dementia in line with other diseases such as cancer etc.

The study assessed the feasibility of a National Dementia Registry for Ireland and its potential for a framework to collect information on dementia in a reliable, accurate, valid, complete and timely way, specifically to explore what role a dementia registry can have in our national strategic approach to dementia. 

The findings suggest that the benefits of developing such a registry make the required investment worthwhile as long as the registry has clear and focused aims and objectives, solid data management and data collection processes, produces credible results and is demonstrably fit-for purpose.

Dr Emer Begley, Policy and Research Manager with The ASI said: “Patient registries can inform clinical and policy decision making and facilitate health policy and research.  Registries enable the trends and course of a condition to be observed, to identify differences and inequities in service provision and service use, to assess the efficacy of clinical outcomes, to explore the impact of the disease, treatment and care plans and other patient-reported outcomes. It is vital that this is progressed as a matter of urgency if we are to live up to the central tenet of the National Dementia Strategy which is “to improve dementia care so that people with dementia can live well for as long as possible, can ultimately die with comfort and dignity, and can have services and supports delivered in the best way possible”

Dr. Louise Hopper, lead author of the report from the School of Nursing and Human Sciences, Dublin City University, states: “This report brings together extensive evidence and analysis of the feasibility of establishing a National Dementia Registry for Ireland. We have an opportunity to learn from the experiences of successful international dementia registries, while existing patient registries in Ireland demonstrate that a lot can be done within the limitations of our current health system. Our findings suggest that the benefits of developing a National Dementia Registry make the required investment worthwhile as long as the registry has clear and focused aims and objectives. The next step will be to develop a comprehensive business case that details exactly how this can be done." 

Pictured at the launch of the report: Dr Kate Irving, Suzanne Hughes, Pat O'Loughlin CEO of the Alzheimer Society of Ireland, Dr Louise Hopper and Professor Teresa Burke.