7: Dementia diagnosis and management
There are several activities proposed or underway to improve primary and secondary care data on dementia diagnosis and management. These include activities to:
- 7a: Conduct a dementia data demonstration project for the National Primary Health Care Data Collection
- 7b: Introduce a dementia measure in the Practice Incentives Program Quality Improvement Incentive
- 7c: Investigate measures of quality of care and quality of life outcomes for hospital patients and aged care residents living with dementia
- 7d: Collect data on lived experience of dementia diagnosis and management
- 7e: Explore the relationship between the characteristics of diagnostic services and health outcomes
- 7f: Develop data on the use of restrictive practices among people living with dementia
Each activity description provides information on the intended outcome, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.
Activity 7a: Conduct a dementia data demonstration project for the National Primary Health Care Data Collection
As part of the development of a National Primary Health Care Data Collection, AIHW’s Primary Health Care Data Development Unit will conduct several data demonstration projects using Primary Health Insights (PHI), a storage and analytics platform that can host de-identified general practice data and other primary health data for Primary Health Networks (PHNs) across Australia. This platform has already been established for this purpose.
The demonstration projects aim to demonstrate the value and utility of compiling general practice data from a selected sample of PHNs, as well as testing governance, data transformation and data flow arrangements with PHNs, within the PHI platform. Following PHN endorsement, dementia management in GP clinical settings has been used as a demonstration project.
This activity will provide insights into how patient management software is used to record and extract information on patients with dementia, and how data extractors identify dementia in GP data, to better understand how these data could improve dementia monitoring.
| Outcome | This activity will provide insight into the value and utility of compiling GP practice data from a sample of PHNs for dementia monitoring. More broadly, outcomes from this project will inform the governance and processes for the development of a National Primary Health Care Data Collection. |
|---|---|
| Level of investment | High |
| Timeframe | Short-medium |
| Responsible stakeholder | AIHW NCMD, AIHW Primary Health Care Data Development Unit and a selection of Primary Health Networks |
| Progress | Complete: The data demonstration project was completed in 2024, and a summary of the project was presented at the AIHW Dementia Data Workshop to inform dementia incidence and prevalence data improvement activities. A summary of the dementia data demonstration project results has been released on the AIHW website, Towards a national primary health care data collection – dementia demonstration project. The project demonstrated that general practice data has the potential to contribute to understanding of dementia, however, also highlighted the limitations and challenges of the data that need to be addressed before a nationally consistent data collection is available. In addition, the NCMD has contracted the Agency for Clinical Innovation (ACI), within NSW Health, to analyse Lumos data and report on dementia care and management in primary health care settings. This project has commenced and will be completed in late 2026. |
Activity 7b: Introduce a dementia measure in the Practice Incentives Program Quality Improvement initiative
The Practice Incentives Program (PIP) Quality Improvement (QI) Incentive is a payment to general practices for activities that support quality improvement in patient outcomes and deliver best practice care. General practices enrolled in the PIP-QI commit to participating in continuous quality improvement activities and submitting de-identified general practice data via the PIP Eligible Data Set. The PIP Eligible Data Set collects data against 10 key Quality Improvement Measures.
The introduction of a new QI measure for dementia care that attracts an incentive payment under the PIP-QI initiative could not only benefit patients but would represent an important dementia data improvement initiative by encouraging reporting of dementia status. This could help generate data at the practice level on reporting of dementia, which could also flow through the better reporting of dementia in clinical records to support Activity 7b and potential reporting of dementia in My Health Record summaries.
Any changes to the PIP-QI measures would be completed over the long term.
| Outcome | Improved dementia recording |
|---|---|
| Level of investment | High |
| Timeframe | Long |
| Responsible stakeholder | Department of Health, Disability and Ageing |
| Progress | Not started. An independent Review of General Practice Incentives has been delivered to government for consideration. |
Activity 7c: Investigate measures of quality of care and quality of life outcomes for hospital patients and aged care residents living with dementia
Options for the regular monitoring of quality of care and quality of life measurements for people with dementia in the health and aged care sectors are important to understanding outcomes.
Quality of life will be required to be collected by residential aged care services as part of the expanded National Mandatory Aged Care QI program from 1 April 2023, reported at the service level on the GEN Aged Care Data website. The Residents’ Experience Survey (formerly the Consumer Experience Interviews) also samples over 10% of residents across Commonwealth aged care homes to generate a Resident Experience Report and ‘star rating’ for each home. If there were a consistent collection of these records at the individual level, and it were possible to access these de-identified data along with the dementia status of the individual, this would open a new suite of possibilities for understanding the residential aged care experience of people living with dementia in Australia.
This activity may also include investigating options for dementia-specific analysis of existing hospital Patient Experience Surveys, other existing quality measures developed by university or health service providers, and the recently funded Australian Consortium for Aged Care Quality Measurement Toolbox (QMET).
| Outcome | Report on quality of life and consumer experience measures for hospital patients and aged care residents living with dementia. |
|---|---|
| Level of investment | Low investment required to examine existing data; any additional activities stemming from this work would require higher investment |
| Timeframe | Medium |
| Responsible stakeholder | AIHW |
| Progress | The NCMD has investigated data sources that provide regular monitoring of quality of care and quality of life measures for people with dementia in the aged care sector. However, for some residential aged care data, this relies on knowing the dementia status of residents, which isn’t currently available in the aged care funding data. The NCMD is working with the department to prioritise and implement a mechanism for the collection of health condition data, including dementia, from residential aged care. A new aged care data module is being built for the National Aged Care Data Asset (delivered via AIHW’s National Health Data Hub). The new module will consist of aged care service-level data and will aim to include data on quality of care, financial information and other service characteristics. This will allow analysis of the operation and performance of the aged care system. In future, this new data module may also allow analysis of the impact of aged care quality on the health trajectories of people living with dementia. |
Activity 7d: Collect data on lived experience of dementia diagnosis and management
The activity relates to activity 2c on Collect data on experiences of people with dementia and their carers by collecting data on the experience of dementia diagnosis and management by people with dementia and their carers from the general population.
This activity may involve additional questions in a lived experience survey, or if the size of the survey is too large, a separate module specific for the experiences of diagnosis and management. This collection would aim to provide data on when symptoms were observed, what prompted seeking a diagnosis, experience in obtaining a diagnosis (including what factors supported, delayed or made a diagnosis more difficult), and experience of dementia management in the health, aged care or disability sectors.
| Outcome | Initial data on the experiences of people living with dementia could identify
Repeated data collections would indicate if the National Dementia Action Plan (NDAP) is leading to improvements in diagnostic and management experiences (NDAP actions 4 and 5). |
|---|---|
| Level of investment | Medium–high |
| Timeframe | Short: This activity should be conducted periodically to collect data over time. |
| Responsible stakeholder | Academic researchers; Organisations with experience in collecting data from people living with dementia and their carers |
| Progress | As part of a Dementia Data Partnership Project, the University of Canberra was contracted to undertake a Living with Dementia Survey. Results are expected in late 2026. |
Activity 7e: Explore the relationship between characteristics of diagnostic services and health outcomes
Memory clinics and other types of specialist dementia diagnostic services provide essential support for people experiencing mild cognitive impairment (MCI) and dementia symptoms. However, the type, diagnostic testing and post-diagnostic support offered within memory clinics and other specialist diagnostic services can vary. While memory clinics and other diagnostic services can play an integral role in early, accurate and timely diagnosis of dementia and MCI, there is limited evidence available on their characteristics and impact in an Australian setting.
In 2023, the Australian Dementia Network (ADNeT) Registry expanded variables included in their data collection. While service provider location is known, little data is available on clinic structure or size. In future, linked ADNeT Registry data can be used to explore the relationship between service provider characteristics and health outcomes of ADNeT participants. This output of this activity would support improved service planning for diagnostic services.
| Outcome | Improved understanding of relationship between diagnostic service characteristics and health outcomes, providing valuable insights for dementia service and policy planning. |
|---|---|
| Level of investment | Medium |
| Timeframe | Medium |
| Responsible stakeholder | AIHW NCMD, Department of Health, Disability and Ageing and ADNeT Registry |
| Progress | Not started. Some data on ADNeT post-diagnostic supports are reported in action 4 of the National Dementia Action Plan indicators dashboard. |
Activity 7f: Develop data on the use of restrictive practices among people living with dementia
Restrictive practices should only be used as a last resort, but sometimes they are an important measure to help prevent harm (Department of Health, Disability and Ageing (DHDA) 2025). Despite the legislative requirements and practice guides in place for the use of restrictive practices there are still occurrences of the inappropriate use of a restrictive practice in residential aged care homes, as well as home and community settings (DHDA 2025).
Restrictive practices may be used more frequently among people living with dementia in residential aged care homes, people living with younger onset dementia (Dementia Australia 2020) and people experiencing behavioural and psychological symptoms of dementia (BPSD).
Types of restrictive practices include chemical restraint, environmental restraint, mechanical restraint, physical restraint and seclusion.
To manage BPSD, non-pharmacological interventions are recommended, but medical professionals may prescribe antipsychotic medicines as a last resort. However, inappropriate prescribing of antipsychotic medicines is a major concern for older people and a key issue raised in the Royal Commission into Aged Care Quality and Safety (Royal Commission 2021). Medication management aims to reduce the inappropriate use of chemical restraints.
There are currently limited data available on restrictive practices and medication management. This activity should explore possible data sources and analysis methods for understanding the use of restrictive practices among people living with dementia.
| Outcome | Improved understanding of the use of restrictive practices in aged care homes and in the community; data for in indicator reporting for NDAP action 5: Improve treatment, coordination of care and support. |
|---|---|
| Level of investment | Low–medium |
| Timeframe | Short–medium |
| Responsible stakeholder | AIHW NCMD and Department of Health, Disability and Ageing; external providers with data collections |
| Progress | The NCMD will explore linked data to understand the use of restrictive practices, particularly antipsychotics, among people living with behavioural and psychological symptoms of dementia within activity 6a. The NCMD is also assessing potential data sources to provide baseline data for action 5 of the National Dementia Action Plan indicators dashboard. This may include linked data from the National Health Data Hub and/or external data sources. |
There is no single test available to diagnose dementia, and a range of cognitive and medical screening tools and assessments are used to make a diagnosis.
A lack of national data on the diagnosis and management of dementia by primary and secondary care providers (in particular, data from general practitioners (GPs) and specialists such as geriatricians) is the largest data gap affecting our understanding of dementia in Australia (AIHW 2020a). Dementia diagnostic information cannot be inferred from Medicare Benefits Schedule (MBS) data, as it is not possible to distinguish between dementia-specific services and services for the management of other health issues (AIHW 2025).
Currently, services provided under the MBS to people with dementia (such as GP and medical specialist consultations, diagnostic tests and some allied health care) can only be examined at a national level through linkage to data sets that include dementia diagnosis information. Important information on dementia diagnosis (such as the date of diagnosis, dementia type, the setting in which dementia is diagnosed, and who made the diagnosis) is captured in various practice management systems, but the capability to report on these for national dementia monitoring has not been determined and they are not available for linkage to other data sets (AIHW 2020b). Better diagnosis data would also allow better examination of post-diagnostic care and support for people with dementia.
More secondary care providers of specialised dementia assessment (in memory clinics or other specialist diagnostic services), are registering new dementia diagnoses with the Australian Dementia Network (ADNeT) Registry, which aims to measure and drive improvement in quality of care and patient outcomes for people diagnosed with dementia or mild cognitive impairment (Ward et al. 2022).
The National Primary Health Care Data Collection (under development) will be an important initiative for improving data on the diagnosis and management of dementia in primary care. The National Primary Health Care Data Collection will fill a long-standing information gap in relation to primary health care data for population health monitoring, research, policy and planning. It will be a key future source of data on dementia that is expected to help fill a range of dementia knowledge gaps.
Importantly, dementia is usually diagnosed, treated and managed in the community, but it may be under-diagnosed in primary care due to lack of symptom recognition, documentation of dementia in medical records and cognitive testing (Ng and Ward 2019). There may also be reluctance to seek medical help due to stigma surrounding dementia or belief that there are no helpful interventions. Poor access to health care providers and a lack of confidence in GPs to diagnose dementia may also contribute to under-diagnosis. Decreasing the stigma around dementia and greater awareness of the benefits from a diagnosis are therefore required to improve diagnosis and capture of dementia in primary care settings.
AIHW (Australian Institute of Health and Welfare) (2020a) Dementia data gaps and opportunities, AIHW, Australian Government, accessed 19 July 2023.
AIHW (2020b) Australia’s health 2020: data insights, AIHW, Australian Government, accessed 19 July 2023.
AIHW (2025) Dementia in Australia, AIHW, Australian Government, accessed 15 October 2025.
Department of Health, Disability and Ageing (DHDA) (2025) Restrictive practices in aged care – a last resort, DHDA website, accessed 11 September 2025.
Ng N and Ward S (2019) ‘Diagnosis of dementia in Australia: a narrative review of services and models of care’, Australian Health Review, 43(4):415–424, doi:10.1071/AH17167.
Ward S, Ahern S, Brodaty H, Wallis K, Lin X, Tsui A, Tran A, Salimi F, Anstey K, Brodtmann A, Chong T, Darling G, Inacio M, Hee Jeon Y, Kain B, Loi S, Maddison J, McCabe M, Naismith S, Natarajan K, Nelson M, Pietsch A, Quirke T, Rand E, Rowe C and Yates M (2022) Australian dementia network registry first annual report (2020–2021), Monash University, Department of Epidemiology and Preventive Medicine, June 2022, Report No 1, accessed 30 August 2023.