Ten-year plan to “harmonise” dementia data knowledge gaps

Researchers will spend the next decade exploring the disease’s risk factors, prevention, stigma, and best-practice care for dementia as part of a new plan to uncover the true prevalence and impact of the disease in Australia.

Led by the Australian Institute of Health and Welfare (AIHW), the National Dementia Data Improvement Plan 2023–2033 aims to bolster the nation’s combined knowledge of dementia and “harmonise” data collected across all sources.

A desire to improve outcomes and quality of life for patients and their carers is at the heart of the decade-long initiative and researchers will collate information on dementia risk factors, stigma, prevalence, severity, and comorbidities.

“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.

GP and coordinator of the Dementia Subgroup of The Royal Australian College of General Practitioners (RACGP) Specific Interests Aged Care, Doctor Stephanie Daly, welcomed the plan and said it is long overdue. 

“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, with researchers getting information from the Pharmaceutical Benefits Scheme (PBS) data around who’s on medication. They also get information on mortality statistics based on death certificates to try and assess prevalence that way.

“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,” Dr Daly explained. 

The AIHW said it is committed to re-evaluating its goals over the course of the 10-year plan to ensure it is focusing on the most current gaps and demands.