Using data linkage for national surveillance of quality of care for people with dementia

Each year in Australia, thousands of families come face-to-face with the realities of dementia in a loved one. Following a diagnosis of dementia, people with dementia and their families will navigate a fragmented healthcare and support system that can be confusing and highly variable across the country. Ensuring that a high quality of care is provided to dementia patients is vital to good patient outcomes, reduces strain on health services, and matters greatly to affected families.

Researchers from the Australian Dementia Network Clinical Quality Registry 1 managed by our School, recently collaborated with the Registry of Senior Australians (ROSA) in Adelaide to examine Australia’s performance in dementia care, as measured by four clinical quality indicators (CQIs). The resulting paper was published in Scientific Reports. The study used the Registry of Senior Australians (ROSA) platform, which has linked the aged care and health care records of older people receiving aged care services across Australia. The aim of the study was to use this platform to derive and monitor over time a number of indicators of quality of care for people with dementia in aged care settings.

Dementia is increasing globally and has been identified by numerous governments and health agencies as a priority, but measuring the associated quality of care can be challenging, due to the diffuse range of settings across which dementia care occurs, and range of health professionals involved. CQIs are measurable structures, processes, or outcomes that can be used to monitor and benchmark care provided at a population level, and variations in CQI performance can indicate geographical areas or populations most in need for policy and quality improvement intervention.

Four CQIs with significant impacts on quality of life were evaluated in data from ROSA’s database of people receiving aged care services in Australia:

  1. exposure to antipsychotic medicines
  2. use of cholinesterase inhibitors and memantine
  3. exposure to high sedative medicine load
  4. and dementia or delirium-related hospitalisations

The retrospective cohort study involved linking data from ROSA with medicine prescription data from the Pharmaceutical Benefits Scheme, state hospitalisation records, the National Death Index, and the Australian Institute of Health and Welfare. 373,695 people with dementia in the ROSA database were included. There was little change in the incidence rate of the four indicators over the last five years. With no discernible improvement over the last five years, the study has deftly highlighted a gap in service provision, and offers insights into strategies to improve the picture. The team were therefore recently awarded the Health Services Research Association of Australia and New Zealand Best Health Services and Policy Research Paper of the Year – Early Career Researcher – Award.

The potential of the ROSA dataset to test further measures of quality of care is currently being explored by the researchers, using CQIs developed by the ADNeT registry and reported in the Journal of Alzheimer’s Disease in 2020 2. These data linkage findings will provide additional evidence of feasibility and utility of the proposed CQIs, and support incorporation into the ADNeT Registry of those indicators that are most accurately reported in real world data. In particular, as people with dementia do not generally have continuity of care, the use of data linkage with existing administrative datasets provides a unique opportunity for follow up of longitudinal complications and outcomes that would otherwise be impossible for this cohort at a population level.

Researcher Professor Susannah Ahern says, ‘This study highlights the utility of data linkage to follow trends in mid to long term dementia outcomes in Australia. This will be an important mechanism of follow up for people with dementia where data regarding outcomes has been sorely lacking. Platforms such as ROSA, which comprise enduring linked datasets, are fantastic resources that enable this type of research to be undertaken in a timely and secure way. The ADNeT registry looks forward to utilizing both clinician derived data regarding diagnosis and early management, and government reported data regarding longer term outcomes, to create a comprehensive picture of the dementia journey to improve our clinical care for people with dementia, and to inform health policy and health service needs.’


1 Lin X, Wallis K, Ward S, Brodaty H, Sachdev P, Naismith S, Krysinska K, McNeil J, Rowe C, Ahern S. The protocol of a clinical quality registry for dementia and Mild Cognitive Impairment (MCI): The Australian Dementia Network (ADNeT) Registry. BMC Geriatrics. 2020 Sep 7;20(1):330. doi: 10.1186/s12877-020-01741-2.

2 Ayton D, Gardam M, Ward S, Brodaty H, Pritchard E, Earnest A, Krysinska K, Banaszak-Holl J, McNeil J, Ahern S. How Can Quality of Dementia Care Be Measured? The Development of Clinical Quality Indicators for an Australian Pilot Dementia Registry. J Alzheimers Dis. 2020;75(3):923-936. doi: 10.3233/JAD-191044.

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