8: Collection and reporting of dementia and other health conditions in aged care data
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:
- 8a: Create guidelines for collecting dementia data in aged care assessments and include training information on dementia data collection in assessor training
- 8b: Incorporate dementia diagnosis information in national aged care data collections
- 8c: Develop dementia identifiers and incorporate into existing data sets.
These 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, 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, the Aged Care Data and Digital Strategy 2024–2029, the Aged Care National Minimum Data Set (NMDS), the Aged Care National Best Practice Data Set (NBPDS) and the National Aged Care Data Asset. For more on AIHW’s aged care data improvement activities, see Data improvements (AIHW 2025).
Activity 8a: Create guidelines for collecting dementia data in aged care assessments and include training information on dementia data collection in assessor training
Health condition data are collected by different people for different purposes, and most assessors and data collectors do not have clinical coding experience and require training specific to the health conditions and the electronic record systems they are using.
The creation of guidelines for collecting dementia data in aged care assessments would include guidance on what data to collect and how to enter the data. Specific dementia data training information would be developed to incorporate into current assessor training to ensure that the data collection is fit for aged care services and ongoing dementia monitoring, following the data collection and use principle of ‘collect once, use multiple times’. This work would involve collaborating with the current assessor trainers to incorporate a dementia flag entry into an intuitive workflow to maximise capture of this data element. These guidelines could be complemented by training developed by training organisations or government agencies promoting the collection of quality systematic electronic data, such as the Australian Digital Health Agency that currently provides free online training to multiple sectors including the aged care sector.
| Outcome | Dementia data collected systematically in aged care assessments |
|---|---|
| Level of investment | Medium |
| Timeframe | Short: This would need to be prioritised as the IAT and AN-ACC are already in use. |
| Responsible stakeholder | Department of Health, Disability and Ageing |
| Progress | Internal departmental consultations are occurring to inform future updates of the IAT. |
Activity 8b: Incorporate dementia diagnosis information in national aged care data collections
The loss of health condition information from permanent residential aged care data mean that people with health conditions, including dementia, will no longer be identified in residential aged care data alone. This will temporarily cease national reporting of many chronic conditions (including dementia) and will impact the data available in the aged care system and limit the number of people being identified with chronic diseases (including dementia) in enduring linked data assets.
Currently, an assessor for the AN-ACC funding model can flag in the assessment whether a person has dementia, but this is not mandatory to collect and is not provided to national aged care data collections, such as the National Aged Care Data Clearinghouse (NACDC). This activity would be a high priority pilot project that involves establishing standard data collection and ICT processes to support the supply of dementia information alongside already supplied data to national aged care data collections. This allows for routine monitoring of dementia among people receiving government-subsidised aged care to recommence and would assist in identifying people with dementia in enduring linked data sets. This activity could provide a pathway to expand to other chronic conditions once mechanisms for reporting are established.
| Outcome | Dementia data collected systematically in national aged care data collections |
|---|---|
| Level of investment | Low |
| Timeframe | Medium |
| Responsible stakeholder | Department of Health, Disability and Ageing; AIHW |
| Progress | The NCMD is working with the AIHW Aged Care Data Improvement Unit and the Department of Health, Disability and Ageing to review and consider improvements to health condition (including dementia) data collection in aged care, in line with the Aged Care NDMS, the Aged Care NBPDS and Dementia NPBDS specifications. The NCMD is also exploring options such as the work outlined in activity 8c. Following this activity, options for improved dementia data collection should also be explored as a dementia flag alone would not specify how diagnosis information was collected (whether it is resident/carer reported, assessor reported and/or based on medical records), or type of dementia (aligned with ICD codes), or date of diagnosis. Options for collecting data on behaviour support plans for people with dementia in residential aged care should also be explored. These plans are now mandatory for people in residential aged care who require or may require the use of restrictive practices as part of their care. Any future aged care data developments should align with the Aged Care Data and Digital Strategy, Aged Care NMDS and the Aged Care NBPDS. Planned developments should involve consultation with AIHW and other key stakeholders on how potential changes may impact aged care data, monitoring and reporting. |
Activity 8c: Develop dementia identifiers and incorporate into existing data sets
This activity involves the creation of dementia flags from existing data that identify a person with dementia for use in data that do not have diagnosis information. This activity would be an interim approach until national enduring data linkages have expanded to include a greater number of data sets.
This approach could explore linking dementia flags derived from the National Hospital Morbidity Database (NHMD) and the NACDC to the ABS Person Level Integrated Data Asset (PLIDA) using the AIHW-ABS interoperable spine. These are currently some of the most reliable sources of diagnostic information for these conditions, and together with Pharmaceutical Benefits Schedule (PBS), mortality, Survey of Disability, Ageing and Carers, and 2021 Census data, have the potential to improve the coverage of people with dementia in the PLIDA.
The creation of flags could also be accompanied by the development of business rules, specifications or detailed code for an aged care derived dementia flag. This methodology could then be applied more broadly to linked assets to improve dementia identification.
| Outcome | Increased identification of dementia in data assets to provide greater coverage and insights into prevalence and impacts of dementia |
|---|---|
| Level of investment | Medium |
| Timeframe | Short–medium |
| Responsible stakeholder | AIHW NCMD |
| Progress | The NCMD is progressing a project that has linked dementia flags from hospital and aged care data into PLIDA to assesses the self-reported dementia data collected from the 2021 Census (activity 3d). This work will provide insights into methods for dementia identification using linked data. The NCMD is also examining the feasibility of a statistical-based proxy for dementia identification in residential aged care using Australian National Aged Care Classification data linked to other data in the National Health Data Hub. |
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:
- The National Screening and Assessment Form (NSAF) previously captured information from the initial screening and assessment process to determine a person’s need for aged care. People with dementia could be identified from assessment data where dementia was recorded as a health condition impacting their care needs. The NSAF was replaced by the Integrated Assessment Tool (IAT) in 2024. The IAT is applicable for in-home aged care, flexible aged care programs, residential respite and entry to residential aged care. The IAT also includes health condition information, including dementia, but data needs to be explored to understand any impacts of the change in reporting from the NSAF.
- 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 (Department of Health, Disability and Ageing 2025), 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 affect national reporting of dementia in residential aged care by reducing the ability to accurately identify individuals living with dementia within linked data, thereby limiting the capacity to assess dementia’s impact on the aged care system. In the interim, national reporting of dementia within residential aged care homes would be possible from what is available in the Australian Bureau of Statistics’ (ABS) Survey of Disability, Ageing and Carers. While these data can provide an overall estimate on the number of people living with dementia based on a sample of surveyed facilities, the survey is collected infrequently and does not provide person-level data that can be used in linked analyses.
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.
AIHW (Australian Institute of Health and Welfare) (2025) Data improvements, GEN Aged Care Data website, AIHW, Australian Government, accessed 10 September 2025.
AIHW (2023) Pathways in aged care 2020: technical guide, GEN Aged Care Data website, AIHW, Australian Government, accessed 12 July 2023.
DHDA (Department of Health, Disability and Ageing) (2022) Aged care reforms and reviews, DHDA website, accessed 15 October 2025.