7: Dementia diagnosis and management
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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 2023).
Currently, services provided under the MBS (such as GP and medical specialist consultations, diagnostic tests and some allied health care) provided to people with dementia at a national level can only be examined 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 examination of post-diagnostic care and support for people with dementia.
More secondary care providers of specialised dementia assessment (in memory clinics or other locations), are registering new dementia diagnoses with the Australian Dementia Network (ADNeT) Clinical Quality 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.
Proposed data improvement activities
There are several activities proposed to improve primary and secondary care data on dementia diagnosis and management. These include activities to:
- conduct a dementia data demonstration project for the National Primary Health Care Data Collection
- assess utility of future National Primary Health Care Data Collection for monitoring dementia diagnosis and management in primary health care
- undertake a detailed exploration of GP or specialist management software to assess utility and suitability of data for dementia monitoring
- review the MBS to include an item for dementia diagnosis and management
- introduce a dementia measure in the Practice Incentives Program Quality Improvement initiative
- investigate measures of quality of care and quality of life outcomes for hospital patients and aged care residents living with dementia.
Each activity description 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.
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. Subject to PHN endorsement, dementia management in GP clinical settings will be used as a demonstration project.
The activity will gain insights into how patient management software is used to record and extract information on patients with dementia, to better understand how these data could improve dementia monitoring.
Outcome: Understand the value and utility of compiling dementia data from a small sample of GPs; this will also inform processes for the development of a National Primary Health Care Data Collection
Priority: Low
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 2 | 1 | 0 | 0 | 3 |
- Alignment: moderately important data gap
- Foundational data:methods (including governance) development
- Dependencies: requires consultation and agreement to access to de-identified patient electronic medical records from GP practices
- Priority group reporting: unlikely
Level of investment: High
Timeframe: Short/Medium term
Responsible stakeholder: AIHW National Centre for Monitoring Dementia (NCMD) and AIHW Primary Health Care Data Development Unit.
Following completion of the National Primary Health Care Data Collection dementia demonstration project and the data shown to have sufficient utility and quality to add value to dementia monitoring, governance and other arrangements for ongoing reporting will be investigated, with a view to allow public reporting of aggregated data and, over the longer term, potential projects involving data linkage.
This activity would occur after Activity 7a (National Primary Health Care Data Collection dementia data demonstration project) had shown the value of GP dementia data and a National Primary Health Care Data Collection was established. The activity would involve assessing utility of the collection to monitor dementia diagnosis and management in primary care and could assess variation in diagnosis or management across PHNs or other demographic variables. If successful, this could allow monitoring of changes over time, to observe any changes in diagnosis and management with different work force education, community awareness programs, or other program changes (for example, those suggested in activities 7d and 7e).
Outcome: Understand the utility of dementia data and management reporting from the National Primary Health Care Data Collection
Priority: Low
Alignment | Foundational | Dependency | Priority Group Data | Priority score |
2 | 1 | 0 | 0 | 3 |
- Alignment: moderately important data gap
- Foundational data:methods (including governance) development
- Dependencies: Activity 7a and establishment of a National Primary Health Care Data Collection
- Priority group reporting: unlikely
Level of investment: High
Timeframe: Short/Medium term
Responsible stakeholder: AIHW NCMD and AIHW Primary Health Care Data Development Unit.
Separate to the National Primary Health Care Data Collection dementia demonstration project (Activity 7a), using PHN data hosted on the PHI platform, a case study would be performed with a GP or specialist practice to examine de-identified records to explore opportunities and limitations of (de-identified) dementia data available from patient management software. It would obtain insights into how patient management software is used in practice to record and extract information on patients with dementia, to better understand how data could contribute to improving future dementia monitoring.
This activity could explore recording of symptoms of dementia, testing for mild cognitive impairment (MCI) and dementia, referrals for assessment, other tests to rule out differential diagnoses, diagnosis within the practice or by specialty memory clinics or specialists, and whether dementia was flagged by the categories provided by the medical software.
Outcome: Understand how patient management software is used in practice to record and extract information on patients with dementia to inform improvements
Priority: Low
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 2 | 1 | 1 | 0 | 4 |
- Alignment: moderately important data gap
- Foundational data:methods (including governance) development
- Dependencies: access to de-identified patient electronic medical records, quality, and completeness of free text data
- Priority group reporting: unlikely
Level of investment: High
Timeframe: Short/Medium term
Responsible stakeholder: AIHW NCMD; academic researchers.
The MBS Review Taskforce undertook the MBS Review between 2015 and 2020 to assess how MBS items could be better aligned with contemporary clinical evidence and practice to improve health outcomes. This included recommendations on items that needed to be amended, removed or created, as well as broader structural changes to the MBS (DoHA 2021a). A review of existing MBS items relevant to dementia would inform recommendations for new dementia-specific MBS items or amendments to existing items to support the identification, assessment and management of dementia in primary care data.
Outcome: Understand the need for new dementia-specific MBS items or amendments to existing items to support the identification, assessment and management of dementia in primary care data
Priority: Medium
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 1 | 0 | 1 | 5 |
- Alignment: highly important data gap
- Foundational data: ability to inform prevalence or incidence would be dependent on specificity of the new MBS item and uptake of this new item by medical professionals
- Dependencies: high
- Priority group reporting: likely – the MBS data currently captures data on select priority populations
Level of investment: High
Timeframe: Medium/Long term
Responsible stakeholder: Department of Health and Aged Care
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 (DoH 2021b). 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
Priority: Medium
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 2 | 0 | 0 | 5 |
- Alignment: moderately important data gap
- Foundational data:yes, but with limitations for interoperability
- Dependencies: high as relies on the development, agreement and implementation of a new PIP item
- Priority group reporting: unlikely
Level of investment: High
Timeframe: Long term
Responsible stakeholder: Department of Health and Aged Care.
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.
This activity may 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 people with and without dementia living in residential aged care facilities and who are admitted to hospital
Priority: Medium
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 1 | 1 | 0 | 5 |
- Alignment: highly important data gap (National Dementia Action Plan (NDAP) objective 4)
- Foundational data: method development
- Dependencies: existing data collection across care and quality of life measures in hospital and aged care
- Priority group reporting: unlikely – based on existing data
Level of investment: Low investment required to examine existing data; any additional activities stemming from this work would require higher investment
Timeframe: Medium term
Responsible stakeholder: AIHW NCMD.
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.
Outcomes: Initial data on the experiences of people living with dementia could identify:
- the magnitude and cause of delays in a timely diagnosis, to inform improvements to diagnosis through both community and GP awareness and health system factors
- experiences with service providers to inform changes needed to improve care and support for people living with dementia
- Repeated data collections would measure changes following actions implemented from the NDAP.
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 2 | 1 | 0 | 7 |
- Alignment: multiple highly important data gaps (NDAP objectives 3 and 4)
- Foundational: for baseline data
- Dependencies: organisations with dementia and/or carer expertise and contacts required
- Priority group reporting: no (numbers likely too low for disaggregation)
Level of investment: Medium–High
The level of investment will depend on the data collection methods. However, this activity may require in-person interviews with people with dementia and collection of qualitative and quantitative data. There may be broader options for collecting data from carers but will need to consider preferences for engagement.
Timeframe: Short-term (<2 years)
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.
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 (2023) Dementia in Australia, AIHW, Australian Government, accessed 23 February 2023.
DoH (2021a) MBS Review – Final taskforce reports, findings and recommendations, DoHAC website, accessed 31 July 2023.
DoH (2021b) PIP QI Incentive guidance, DoHAC website, accessed 6 October 2022.
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.