8: Collection and reporting of dementia and other health conditions in aged care data

While many people with dementia live independently and rely on carers, family and friends for assistance, community-based aged care services are important for supporting older Australians to remain living in their own home for as long as possible. Residential aged care is also important, particularly for those in the advanced stages of dementia who need ongoing care and accessible accommodation.

Aged care data have been subject to change due to aged care reforms. This has impacted the use of aged care data for dementia monitoring purposes. Currently aged care assessment data and residential aged care data are used for national dementia monitoring, providing information on people with dementia seeking access to government-subsidised aged care and people with dementia living in residential aged care. There is very limited data on people with dementia accessing community-based services. 

However, these data have changed in recent years and will change in the near future:

  • The National Screening and Assessment Form (NSAF) captures information from the initial screening and assessment process to determine a person’s need for aged care (coordinated through the My Aged Care system). People with dementia can be identified from assessment data where dementia is recorded as a health condition impacting their care needs.
  • The NSAF is expected to be replaced with the Integrated Assessment Tool (IAT) in 2025. The IAT will be applicable for home care, residential aged care, transitional care and respite, and the IAT is likely to include whether there is a confirmed dementia diagnosis.
  • Data from the Aged Care Funding Instrument (ACFI) were previously used to report on people living with dementia in residential aged care as it captured information on health conditions impacting care need. However, the ACFI was replaced with the Australian National Aged Care Classification (AN-ACC) from 1 October 2022 (DoHAC 2022), which no longer collects information on health conditions.

While the AN-ACC assessment will continue providing information on a person’s level of cognitive impairment, specific clinical diagnosis information is not provided. This will impact national reporting of dementia in residential aged care and the ability to measure dementia’s impact on the aged care system and will under-report people with dementia and their ability to be linked in enduring linked data assets. In the interim, national reporting of dementia among residential aged care facilities would be possible from what is available in the Australian Bureau of Statistics’ (ABS) Survey of Disability, Ageing and Carers. 

The lack of health condition data collection in the AN-ACC has reduced the data available for understanding specific disease prevalence, and risk factors for other conditions among people living in residential aged care, as well as data to identify persons with dementia in linked data.

Proposed data improvement activities

There are 3 main activities proposed to improve the collection and reporting of dementia and other health conditions in aged care data. These include activities to:

  • create guidelines for collecting dementia data in aged care assessments and include training information on dementia data collection in assessor training
  • incorporate dementia diagnosis information in national aged care data collections
  • develop dementia identifiers and incorporate into existing data sets.

My Aged CareThese activities may involve single projects, or multiple projects to enable monitoring of trends over time, incorporate improvements in data or to focus on a specific population group. Each activity provides information on the intended outcome, priority rating, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.

Activities aimed at improving dementia data through increased national data linkages and ensuring data are collected in a consistent manner in different national data sets would also improve data on people with dementia using aged care. See Dementia prevalence and incidence and Dementia type for additional activities.

As described in Enablers to support success of this plan a broad program of work is underway to improve the quality, coverage and availability of aged care data. This includes government actions in responses to the Royal Commission into Aged Care Quality and Safety, a National Aged Care Data Strategy scheduled for release in June 2024, an Aged Care National Minimum Data Set (NMDS), and a National Aged Care Data Asset. The AIHW Dementia Unit is working with the AIHW Aged Care Data Improvement and Ageing and Aged Care Units to ensure that dementia is included in the Aged Care NMDS. For more on AIHW’s aged care data improvement activities, see Data improvements (AIHW 2022).