DEMENTIA REGISTRY IMPORTANT NEXT STEP IN THE FIGHT AGAINST DEMENTIA.
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."
You can view the full report here: http://bit.ly/2gIIdv5
Ends: For all media queries please contact Head of Advocacy and Public Affairs, Tina Leonard 087
2243004.