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Ten-year plan to fill dementia knowledge gaps
Researchers will spend the next decade exploring the disease’s risk factors, prevention, stigma, and best-practice care.
According to new statistics released last week, in 2022 more than 400,000 Australians were living with dementia.
An ambitious new plan has been launched to uncover the true prevalence and impact of dementia in Australia.
Led by Australian Institute of Health and Welfare (AIHW), the National Dementia Data Improvement Plan 2023–2033 aims bolster the nation’s combined knowledge of the disease with a focus on ‘harmonised dementia data collected across sources’.
A desire to improve outcomes and quality of life for patients and their carers is at the heart of the decade-long initiative.
‘A lack of national data on the diagnosis and management of dementia by primary and secondary care providers – in particular, data from GPs and specialists such as geriatricians – is the biggest single data gap affecting our understanding of dementia in Australia,’ the AIHW said.
Researchers will also collate information on dementia risk factors, stigma, prevalence, severity, and comorbidities.
GP and coordinator of the Dementia Subgroup of RACGP Specific Interests Aged Care Dr Stephanie Daly welcomed the plan, saying it is long overdue.
‘We think we know how big the problem is but until you start recording actually what’s happening, you don’t really know how to help,’ she told newsGP.
‘Once you start recording, you can actually track how you’re performing, and they are not just looking at incidence and prevalence, they’re looking at how the diagnosis is being made, who’s making a diagnosis, what’s happening to people after they’ve had the diagnosis made.
‘We will be able to see whether we’re actually meeting the standard that we should be setting ourselves.’
Over the next 10 years, the plan will:
- conduct national surveys of dementia awareness, risks and attitudes
- collect data on the experiences of people living with dementia and carers
- create guidelines for collecting dementia data in aged care assessments
- collect data on the knowledge of dementia in healthcare
- incorporate dementia diagnosis information in national aged care data collections
- link dementia onset data to clinical records containing date of dementia diagnosis.
The idea for the investigation came from a need to fill data gaps identified in the development of the
National Dementia Action Plan.
The Australian Dementia Network (ADNeT) has already established the Clinical Quality Registry, aiming to track, benchmark and report on the clinical care of people with dementia.
But Dr Daly said Australia still has no national registry covering all diagnoses that is adequately embedded within the broader healthcare system.
‘[Researchers] get information from the Pharmaceutical Benefits Scheme [PBS] data around who’s on medication, and they get information from the mortality statistics, based on death certificates, and they can try and assess prevalence that way,’ she said.
‘But because we don’t have any information on people who are likely to develop dementia, we don’t know how to plan services, and that’s not only for medical services, but social services as well.
‘It’s a big task but it’s definitely the way to go because you can’t possibly know what you’re up against and it might bring it even more to the forefront of people’s awareness of how prevalent it is.’
According to updated numbers released last week by the AIHW, there were 401,300 Australians living with dementia in 2022. With the country’s ageing and growing population, it is predicted that number will more than double by 2058 to 849,300.
Associate Professor Paresh Dawda, a member of the RACGP Expert Committee – Quality Care, described the data overhaul as ‘fantastic’.
‘The plan is comprehensive and has taken an inclusive approach for its development,’ he told
newsGP.
‘The purpose of collecting the data ultimately would be for it to translate into better outcomes and experiences for consumers and carers at an individual and population level.
‘This requires intelligent insights and enablers for the system to respond to the changes.’
The AIHW said it is committed to reevaluating its goals over the course of the 10-year plan to ensure it is focusing on the most current gaps and demands.
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