Summary of activities ranked by priority

The following 3 tables provide a summary of the high, medium and low ranked activities, organised by the ability to provide monitoring data for the draft National Dementia Action Plan (NDAP) objectives.

Table 4.3: High priority dementia data improvement plan activities
NDAP objective1NDDIP #NDDIP activityAnticipated outcomeTimeframe2Data sources3Responsible stakeholder4
Tackling stigma and discrimination2aConduct nationally representative survey/s of dementia awareness, risks and attitudes in the Australian communityData on community attitudes and knowledge of dementia and risk factors to inform where knowledge gaps are and what types of information needs to be provided

Repeated surveys would measure any changes following awareness campaigns and actions implemented from the NDAP		2023 Baseline

2028 Wave 2

2033 Wave 3		Australian Dementia Awareness Survey5NCMD
 2bCollect data on dementia awareness and attitudes among priority groups (including First Nations people and culturally and linguistically diverse (CALD) groups)Data on attitudes and knowledge of dementia and risk factors among priority groups to inform where knowledge gaps are and what types of information needs to be provided

Repeated data collections would assess changes following awareness campaigns and actions implemented from the NDAP		2024 BaselineNew survey5External partnerships
 2cCollect data on the experiences of people with dementia and their carersInitial data would provide data on the experiences of people living with dementia and their carers and could identify discrimination experienced, diagnosis delays, and experiences with service provers

Repeated data collections would measure changes following actions implemented from the NDAP		2024 BaselineNew survey5External partnerships
 2dCollect data on experiences of people with dementia and their carers among priority groups (including First Nations people and CALD groups)Initial data would provide data on the experiences of people living with dementia and their carers among priority groups and could identify discrimination experienced, diagnosis delays, and experiences with service provers

Repeated data collections would assess changes following actions implemented from the NDAP		2024 BaselineNew survey5External partnerships
Minimising risk, delaying onset and progression1aInvestigate known and emerging risk and protective factors for dementia and their impactsMore comprehensive estimates of the contribution of each risk factor on dementia prevalence and mortality in Australia and how this may change over time, and enable monitoring of risk factors following preventive health initiatives2024 Initial report

2027 Update		New and existing enduring data linkages5External partnerships
Improving dementia diagnosis and post-diagnostic care and support4aLink dementia onset data to clinical records containing date of dementia diagnosis and calculate timeliness of diagnosisData available on time between onset of dementia symptoms and diagnosis made

Subsequent data collections and linkages would allow examination of trends in time to diagnosis, over time		2024Lived experience data and clinical recordsNCMD

External partnerships
 7gCollect data on lived experience of dementia diagnosis and managementInitial 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 general practitioner (GP) awareness and health system factors; and 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		2026New survey5External partnerships
 8aCreate guidelines for collecting dementia data in aged care assessments and include training information on dementia data collection in current assessor trainingDementia data collected systematically in aged care assessmentsTBDBuilds capability for more systematic data collectionDepartment of Health and Aged Care
 8bIncorporate dementia diagnosis information in national aged care data collectionsDementia data collected systematically in nationally aged care data collectionsTBDHealth, aged care and disability data6NCMD

Department of Health and Aged Care
 8cDevelop dementia identifiers and incorporate into existing data setsIncreased identification of dementia in data assets to provide greater coverage and insights into prevalence and impacts of dementia2026Existing data sourcesNCMD
 9aExplore availability and quality of data on people with dementia accessing First Nations-specific primary health care servicesBetter data on people with dementia accessing First Nations-specific primary health care2028Existing data sourcesTBD
Improving treatment, coordination, and support along the dementia journey10aExplore patterns of service use, transitions of care and access of services relative to need for people living with dementia using linked dataBetter data on the use of carer and support services for people living with dementia2026Existing data sourcesNCMD
Supporting people caring for those living with dementia13cCollect data on lived experience of carers of people with dementiaInitial data on the experiences of carers of people living with dementia could identify: carer health and wellbeing and how this impacts, and is impacted by, caring for a person with dementia; carer use of and experience with support service providers for both the person living with dementia and for their own wellbeing, including helplines, counselling and respite services; experience navigating the health, aged care and disability sectors to access service and supports; and dementia training awareness, access and satisfaction2026New survey5External partnerships
Building dementia capability in the workforce11aCollect data on the knowledge of dementia, risk factors, risk reduction strategies, and capability in the workforce caring for and supporting people with dementiaData on workforce knowledge of dementia, including risk factors, prevention strategies, capability, and adherence to evidence-based clinical practice, established to inform workforce training and minimum standards2033New survey5NCMD
Improving dementia data and maximising the impact of dementia research and innovation3aIncorporate dementia data in enduring linked data assets to meet the needs of dementia monitoringBetter diagnosis, prevalence, cost, services, transitions to aged care and outcomes data for the Australian national population and by priority groupsTBDNew and existing enduring data linkages5NCMD
 3bIncrease coverage of existing data for national dementia incidence monitoringRecommendations on activities to expand existing data sources to achieve nationally representative dementia incidence dataTBDExisting data sources

New and existing enduring data linkages5		NCMD

External partnerships
 3cInvestigate approaches to estimate the national prevalence of dementiaRecommendations to develop national estimates of dementia in Australia through population-based studiesTBDNationally representative dementia prevalence dataNCMD

External partnerships
 3dAssess new self-reported dementia data collected in the 2021 CensusInform the use of Census data for monitoring dementia and estimating dementia prevalence in Australia

Provide evidence to support the inclusion of a question on dementia in future Censuses		2024Existing data sourcesNCMD
 3eEstimate dementia prevalence in priority population groupsImproved methods and data to estimate prevalence of dementia among priority groups2026Methods developedAIHW

NCMD

External partnerships
 5aEnsure dementia data are consistently collected in core data setsDementia data collected consistently and more broadly across sectors2028All administrative data sets containing dementia information6NCMD

Notes

  1. All address National Dementia Action Plan (NDAP) Objective 7, Focus areas 7.3 and 7.4.
  2. Timeframes assume commencement of National Dementia Data Improvement Plan (NDDIP) activities in 2024. The dates for text in grey are uncertain. TBD is ‘To Be Determined’.
  3. Further information on current or proposed data sources are included in activity descriptions.
  4. The organisation(s) most suitable for completing the activity.
  5. New National Centre for Monitoring Dementia (NCMD) or AIHW activities.
  6. Includes national and jurisdictional data.
Table 4.4: Medium Priority Dementia Data Improvement Plan Activities
NDAP objective1NDDIP #NDDIP ActivityAnticipated outcomeTimeframe2Data sources3Responsible stakeholder4
Minimising risk, delaying onset and progression1bExpand dementia risk factors included in Australian Burden of Disease Study analysisGreater inclusion of dementia risk and protective factors data in burden of disease studies allowing greater appreciation of burden and avoidable burden to inform policy and prevention programs2024–2026Existing data sourcesAIHW
Improving dementia diagnosis and post-diagnostic care and support6bValidate data on select behaviours collected in aged care assessment dataBetter understanding of behaviours data collected in aged care assessment data and their use for national monitoring of behavioural and psychological symptoms of dementia (BPSD) in Australia2025–2026Existing data sources

New and existing enduring data linkages5		External partnerships
 6cAssess feasibility to incorporate measures of behaviours associated with dementia in existing national surveys or population-based studiesNational data on people with dementia experiencing BPSD, including those who do not currently access behavioural support services2025Existing data sourcesNCMD
 9aExplore availability and quality of data on people with dementia accessing First Nations-specific primary health care servicesBetter data on people with dementia accessing First Nations-specific primary health care2028Existing data sourcesTBD
 14aExpand existing national reporting on the direct expenditure of dementiaImproved data on the direct expenditure on dementia available to support investments in research and prevention initiatives2028–2030Existing data sourcesAIHW
Improving treatment, coordination and support along the dementia journey7dReview the Medicare Benefits Schedule (MBS) to include an item for dementia diagnosis and managementUnderstand 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 data2031Existing data sourcesDepartment of Health and Aged Care
 7eIntroduce a dementia measure in the Practice Incentives Program Quality Improvement initiativeImproved dementia recording2026Aggregate practice dataAIHW
 7fInvestigate measures of quality of care and quality of life outcomes for hospital patients and aged care residents living with dementiaReport 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 hospital2028Existing data sourcesNCMD
 12aExamine comorbidities among people living with dementia using linked dataIncreased data on comorbidities among people living with dementia including impacts on people living with dementia and impacts on health and aged care systems2025New and existing enduring data linkages5NCMD
Supporting people caring for those living with dementia13aAssess health and welfare of carers of people with dementia using linked dataBetter data on informal carers of people living with dementia and the health and welfare factors that impact sustaining their carer role2026New and existing enduring data linkages5NCMD
Building dementia capability in the workforce11bReport data from dementia education and training across AustraliaCollated national reporting of dementia-specific training and qualification data to monitor dementia workforce capability2025Leverage information from regulators of training providers or perform a new survey5NCMD
Improving dementia data and maximising the impact of dementia research and innovation3fDevelop a Regional Insights portal of dementia data for local areasEasy access to local geographic and comparator dementia statistics2028New and existing enduring data linkages5AIHW

NCMD

External partnerships
 3gAssess impact of dementia coding changes in ICD-11 when incorporated in the Australian health system in capture of dementia in administrative dataKnown impact of coding changes for dementia in ICD-11 and more rapid adaptations to existing routine monitoring of dementia using ICD coded data2026 Implementation

2028 Review		Existing data sources

New and existing enduring data linkages5		NCMD
 9bIncorporate dementia data in Regional Insights for Indigenous Communities (RIFIC) websiteBetter data available on dementia among First Nations people2026Existing data sourcesAIHW
 14bUndertake updates of the indirect costs of dementia in AustraliaUp-to-date estimates of the indirect costs due to dementia to support investments in service provision, research and so on2032Specific studiesNCMD

Notes:

  1. All address National Dementia Action Plan (NDAP) Objective 7, Focus areas 7.3 and 7.4.
  2. Timeframes assume commencement of National Dementia Data Improvement Plan (NDDIP) activities in 2024. The dates for text in grey are uncertain.
  3. Further information on current or proposed data sources are included in activity descriptions.
  4. The organisation(s) most suitable for completing the activity. TBD is ‘To Be Determined’.
  5. New National Centre for Monitoring Dementia (NCMD) or AIHW activities.
Table 4.5: Low Priority Dementia Data Improvement Plan Activities
NDAP objective1NDDIP #NDDIP ActivityAnticipated outcomeTimeframe2Data sources3Responsible stakeholder4
Improving dementia diagnosis and post-diagnostic care and support6aDetermine outcomes and transitions of care for people with behavioural and psychological symptoms of dementia (BPSD) using linked dataBetter data on outcomes and transitions of care for people with dementia experiencing BPSD2028New and existing enduring data linkages5TBD
 7aNational Primary Health Care Data Collection dementia data demonstration projectUnderstand the value and utility of compiling dementia data from a small sample of general practitioners (GPs)

This will also inform processes for the development of a National Primary Health Care Data Collection		2024 Initial practice explorationNew and existing enduring data linkages5AIHW
Supporting people caring for those living with dementia13bExplore collection of data on whether care recipient has dementia in existing carer support services data (such as data from Carers Australia, Carers Gateway)Identify whether improvements can be made in existing carer support services data and whether this is an appropriate avenue for dementia data improvement2031Existing data sourcesNCMD
Improving dementia data and maximising the impact of dementia research and innovation7bAssess utility of future National Primary Health Care Data Collection for monitoring dementia diagnosis and management in primary health careUnderstand the utility of dementia data and management reporting from the National Primary Health Care Data Collection2024–202New enduring data linkages5AIHW
 7cDetailed exploration of GP or specialist management software to assess utility and suitability of data for dementia monitoringUnderstand how patient management software is used in practice to record and extract information on patients with dementia to inform improvements2024-2026Existing data sourcesNCMD

Notes:

  1. All address National Dementia Action Plan (NDAP) Objective 7, Focus areas 7.3 and 7.4.
  2. Timeframes assume commencement of National Dementia Data Improvement Plan (NDDIP) activities in 2024. The dates for text in grey are uncertain.
  3. Further information on current or proposed data sources are included in activity descriptions.
  4. The organisation(s) most suitable for completing the activity. TBD is ’To Be Determined’
  5. New National Centre for Monitoring Dementia (NCMD) or AIHW activities.
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