Analysis: a National Dementia Registry would create a framework for reliable, accurate, valid and timely dementia data
Approximately 64,000 people live with a diagnosis of dementia in Ireland. That number is expected to double to 150,000 by 2045. I say 'approximately' because Ireland lacks hard data on the actual number of people living with dementia in this country.
High-quality clinical care improves the lives of people with dementia, yet there is a lack of consistency in the care that is available across the country. In particular, access to specialist dementia care varies from place to place. This can result in a lack of equity, but where a person lives should not determine the care they can expect to receive
Many countries recognise the vital role of dementia data in facilitating equitable access to quality services. An information system that brings all of the important person- and care-related data together in one place can support the development, operation and quality of their dementia health and social services.
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In contrast, Ireland has no systematic approach to the collection and analysis of dementia data. Although clinical settings gather data that in many cases informs their own patient monitoring and service development, this does not feed into a national picture.
Why build an information system for dementia?
Without knowing how many people in Ireland have dementia, we cannot treat it properly, and nor can we allocate adequate resources to that treatment. The HSE Corporate Plan 2021-2024 acknowledges that robust data and information can support planning and decision making and assist in identifying the impact of interventions on services and patient outcomes.
Developing a national dementia registry will require us to change how we record dementia-related information. But the reward for this is an effective framework for managing reliable, accurate, valid, complete and timely dementia data.
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How to build a National Dementia Registry
A report about this model, authored by Christina Bowen and Dr Louise Hopper from the School of Psychology at DCU, has just been published.
The Irish system currently has fragmented dementia data from multiple settings (eg GP clinics, memory clinics, outpatient clinics) that is mostly unstandardised and recorded in unconnected systems which makes retrieval difficult.
Our aim was not to generate another standalone database to add to the already disparate collection of health data in this country. Instead, our model demonstrates that we can address a current need while building the foundations on which integration with existing data sources within the HSE can be built as the availability of electronic health data improves.
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Our model was co-designed with the active and meaningful involvement of people with dementia, family carers, clinicians, and experts in health informatics, patient registries and information technology. Potential quality indicators were identified and through collaboration with existing dementia registries.
These were prioritised by our stakeholders and the five they agreed on were; proportion of patients undergoing basic dementia diagnostic work up, overall quality of life of person with dementia, proportion of people with dementia who receive a specific dementia diagnosis, overall quality of life and wellbeing of family carers and proportion of people treated with antipsychotic drugs.
What's the right data to collect?
Data is useless if you're not collecting what you need so it was important for us to identify which data to collate and collect. Agreeing this promotes standardisation and efficient reporting of dementia data. It also supports comparison by geographical location, centre, service and type of dementia, and to international data.
Four categories of data emerged; Personal characteristics of the person with dementia, health provider details, diagnostic data and treatment and care data.
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From RTÉ Radio 1's Let's Talk Dementia, Fionnuala Sweeney looks at every aspect of dementia, from diagnosis to carers and end of life care.
What are the key recommendations?
Five key recommendations came out of our report.
(i) Funding and long-term commitment
(ii) Development of infrastructure and systems
(iii) A phased implementation - As memory clinics capture a rich source of data, they are the most logical starting point for the registry.
(iv) Prioritise work on projects that assist the National Dementia Registry
(v) Determine the strategic direction for health data in Ireland - we have demonstrated that a lot can be done while we are waiting for this to be developed as long as we have one eye on the future.
What happens next?
It is vital that we press on and make the everyday collection of standardised dementia data a reality.
"The findings of this project show that a dementia registry is a feasible way to systematically collect and analyse data on dementia in Ireland", state the National Dementia Office in the HSE, "helping to shape a responsive and fit for purpose system, targeting the development of services and supports and importantly enabling the implementation of any future dementia models of care. A timely output from the project is the identification of the dementia minimum data set"
If the last 15 months has taught us anything, it is that data is crucial. Data can support us in delivering quality care and developing services where there is equity of access.
The full report and summary are now available, as is the minimum data set used. This project was funded by the Dormant Accounts Fund through the Department of Health and commissioned by the National Dementia Office in the HSE
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
