8: Collection and reporting of dementia and other health conditions in aged care data
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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).
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
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 2 | 1 | 1 | 7 |
- Alignment: highly important data gap
- Foundational data: prevalence and aged care service data
- Dependencies: dependent on policies to prioritise assessors training for dementia reporting
- Priority group reporting: likely
Level of investment: Moderate
Timeframe: Short term (<2 years)
This would need to be prioritised as the AN-ACC is already in use.
Responsible stakeholder: Department of Health and Aged Care.
The loss of health condition information from permanent residential aged care data and potential changes to aged care assessment data mean that people with health conditions, including dementia, will no longer be identified in 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
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 3 | 1 | 1 | 8 |
- Alignment: highly important data gap
- Foundational data: prevalence and aged care service data
- Dependencies: high, dependent on changes to collection of dementia data as part of the AN-ACC
- Priority group reporting: likely – likely to support better reporting across priority groups
Level of investment: Low
Timeframe: Medium term (2–6 years)
The timeframe is dependent on the time taken to implement standard data collection and ICT processes, which are unknown at this stage.
Responsible stakeholder: Department of Health and Aged Care; AIHW.
Following this activity, options for improved dementia data collection should also be explored as the flag option doesn’t 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 developments also need to align with the directions outlined in the National Aged Care Data Strategy and should involve consultation with AIHW and other key stakeholders on how potential changes may impact aged care data, including development of the Aged Care NMDS.
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 Multi-Agency Data Integration Project (MADIP) 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 and 2021 Census data, have the potential to improve the coverage of people with dementia in the MADIP.
This may also provide an interim solution for the loss of dementia diagnosis data in residential aged care data. Incorporating a dementia flag into the Pathways in Aged Care (PIAC) linkage map would allow greater identification of people living with dementia in residential aged care. The PIAC 2020 link map uses the Medicare Consumer Directory (MCD) as the spine for data linkage. The spine is an enduring piece of data infrastructure that improves the efficiency and quality of data linkage projects (AIHW 2023). This activity would occur prior to activities aimed to increase dementia data in enduring national data linkages (described in Dementia prevalence and incidence).
Outcome: Increased identification of dementia in data assets to provide greater coverage and insights into prevalence and impacts of dementia
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 3 | 1 | 1 | 8 |
- Alignment: highly important data gap
- Foundational data:identifier to inform linkages
- Dependencies: approvals for supply of dementia flags from existing data and linkage to existing data
- Priority group reporting: likely
Level of investment: Medium
Timeframe: Short/Medium term
Responsible stakeholder: AIHW National Centre for Monitoring Dementia.
AIHW (Australian Institute of Health and Welfare) (2022) Data improvements, GEN Aged Care Data website, AIHW, Australian Government, accessed 3 May 2023.
AIHW (2023) Pathways in Aged Care 2020: technical guide, GEN Aged Care Data website, AIHW, Australian Government, accessed 12 July 2023.
DoHAC (Department of Health and Aged Care) (2022) Residential aged care funding reform, DoHAC website, accessed 19 July 2023.