Dementia in Australia

The Australian Burden of Disease Study (ABDS) 2024 provides projected estimates of burden of disease for 220 diseases and injuries for the total population for 2024, as well as comparisons over time (for 2011, 2015 and 2018). The study used trend analysis techniques to project increases in sex- and age-specific rates in disease burden. The 2024 ABDS also provides estimates of the disease burden attributable to specific risk factors. The ABDS uses Australian data sources and adapts the methods from global studies to produce estimates that are relevant to the Australian context (AIHW 2024). Full analysis techniques can be found in the ABDS technical notes.

The Australian Burden of Disease Study 2018 provides the latest data on subnational burden of disease estimates, including by state and territory, remoteness and socioeconomic group, including comparisons over time (2011 and 2015) (AIHW 2021).

The Australian Burden of Disease Study 2018 provides First Nations-specific burden of disease estimates for the First Nations population for 2018 and comparisons with 2011 (AIHW 2022).

The fatal burden estimates for dementia were derived from the AIHW National Mortality Database and considered high quality. National non-fatal burden estimates for dementia were based on prevalence rates published in this online report applied to the relevant Australian estimated resident populations. The severity distribution was based on estimates published by Barendregt and Bonneux (1998) for those aged under 80 and from a study by Lucca et al. (2015) for those aged 80 and over. The quality of the non-fatal burden estimates could be improved if more recent and more generalisable data on dementia prevalence and severity in Australia becomes available.  

A comparative risk assessment method was used to quantify the impact of each risk factor on the disease burden for associated diseases, referred to as the ‘attributable burden’. Diseases that were found to have a causal association with dementia and their associated relative risks (the amount of additional risk of developing dementia if exposed to the risk factor) were based on those used in recent Global Burden of Disease studies and several epidemiological studies. The prevalence of exposure to each risk factor was derived from a variety of Australian-specific data sources.

References

AIHW (2024) Australian Burden of Disease Study 2024, AIHW, Australian Government, accessed 22 August 2025.

AIHW (2021) Australian Burden of Disease Study 2018: Interactive data on disease burden, AIHW, Australian Government, accessed 22 June 2025.

AIHW (2022) Australian Burden of Disease Study: impact and causes of illness and death in Aboriginal and Torres Strait Islander people 2018, AIHW, Australian Government, accessed 22 August 2025.

Barendregt JJM and Bonneux LGA (1998) Degenerative disease in an ageing population models and conjecture, Erasmus University, accessed 16 August 2024.

Lucca U, Tettamanti   M, Logroscino G, Tiraboschi P, Landi C, Sacco L, Garrì M, Ammesso S, Bertinotti C, Biotti A, Gargantini E, Piedicorcia A, Nobili A, Pasina L, Franchi C, Djignefa Djade C, Riva E and Recchia A (2015) Prevalence of dementia in the oldest old: the Monzino 80-plus population based study, Alzheimer's & dementia, 11(3):258–70.e3,  doi:10.1016/j.jalz.2014.05.1750.

The Estimated Resident Population (ERP) is the official measure of the Australian population and contains estimates of the usual resident population of Australia. The ERP includes all people, regardless of nationality or citizenship, who usually live in Australia (except for foreign diplomatic personnel and their families).

Throughout this report, ERP data were used to derive rates, such as dementia prevalence in the Australian population. The ERP data were sourced from the ABS using the most up-to-date estimates available at the time of analysis.

To derive its estimates of the resident populations, the ABS uses the 5-yearly Census of Population and Housing data and adjusts them as described here:

• All respondents in the Census are placed in their state or territory, Statistical Local Area and postcode of usual residence; overseas visitors are excluded.
• An adjustment is made for persons missed in the Census.
• Australians temporarily overseas on Census night are added to the usual residence Census count.

Estimated resident populations are then updated each year from the Census data, using indicators of population change, such as births, deaths and net migration.

Projections of the Australian population past 2024 are formulated based on past demographic trends projected into the future. The ABS Series B (or medium series) population projections were used in this report.

More information is available from the ABS website.

The National Aged Care Data Clearinghouse (NACDC) is an independent and central repository of national aged care data, mostly related to government-subsidised aged care programs operating under the Aged Care Act 1997.

The holdings include activity data for residential aged care programs, community-based aged care packages, aged care needs assessments and several other aged care programs and packages. The holdings also include recipient details, payment subsidies, and service (facility/provider) details. These data are refreshed annually (including a full replacement of historical data) by the Department of Health, Disability and Ageing and are sourced from the Human Services payment systems, centralised client record systems and minimum datasets.

This report presents information from three key datasets as part of the NACDC – data from the National Screening and Assessment Form (NSAF), the Aged Care Funding Instrument (ACFI) and from the Home Care Packages (HCP) Program.

National Screening and Assessment Form data – aged care needs assessments

The National Screening and Assessment Form (NSAF) was used for aged care needs assessments from 1 July 2015 until 30 June 2024. From 1 July 2024 this has been replaced by the Integrated Assessment Tool (IAT). Aged care needs assessments using the NSAF that were completed between 1 July 2023 and 30 June 2024 are presented in this report.

Following an initial screening through the My Aged Care system – the starting point for accessing aged care services subsidised by the Government – there were two main types of assessment services using the NSAF depending on the level of care needed:

• Home Support Assessments – for people seeking community-based entry-level support that is provided under the Commonwealth Home Support Program.
• Comprehensive Assessments – for people with complex and multiple care needs to determine the most suitable type of care (home care, residential or transition care). 

As part of a home support assessment or a comprehensive assessment an assessor could record up to 40 health conditions which impact the person’s care needs, including mental health conditions or disabilities. This allows people who report having dementia to be identified (AIHW 2025).

Assessors approved people to use multiple aged care services, based on their immediate needs and long-term care needs. Information on the aged care service approvals for people living with dementia who completed comprehensive aged care needs assessments are available in the NSAF data. However, the NSAF did not record whether people accessed services they were approved for.

The following should be considered when interpreting NSAF data presented in this report:

• While the information is reflective of people who completed a home support or comprehensive assessment, this does not equate to the number of people who were approved to use aged care services, or the number of people who were using aged care services that year.
• A small number of individuals were associated with the same assessment record. In these instances, assessment information was extracted for the most recent assessment or assessment with a record of dementia.
• A person was considered to have dementia if dementia was recorded as a health condition impacting their care needs (primary condition or otherwise, see Table 2 for a full list of codes used). This may not capture everyone with dementia because not all people with dementia will have the condition impact their care needs.
• Individuals with missing date of birth or sex information were excluded.
• Due to small counts and confidentiality issues, intersex individuals were excluded from the analysis.
• Individuals with missing Indigenous status were not included in counts of First Nations people and non-Indigenous Australians.

a. People who had cognitive impairment recorded and no record of dementia were not counted as having dementia but were reported separately.

Home Care Packages (HCP) Program data – dementia and cognition supplement for home care

Between 1 July 2016 and 30 June 2024, the Home Care Packages Program provided community-based care and services to people with greater or more complex care needs to support them to live safely and independently at home. Four levels of support were provided, ranging from Level 1 (for people with basic care needs), to Level 4 (for people with high care needs).

The dementia and cognition supplement for home care is used as a proxy for the number of people with dementia who accessed the Home Care Packages Program in this report. Dementia status was not recorded by the Home Care Packages Program and aged care needs assessments conducted using the National Screening and Assessment Form did not record whether people accessed services they were approved for.

The dementia and cognition supplement for home care provided additional funding for people with moderate or severe cognitive impairment to acknowledge the additional costs associated with caring for this group. To receive the supplement a person had to meet specified criteria as part of a psychogeriatric assessment performed by a medical professional trained in the cognitive assessment tool (Department of Health, Disability and Ageing 2025).

Home Care Packages Program Data from 1 July 2023 and 30 June 2024 are presented in this report. The flag for the dementia and cognition supplement was used to identify people with dementia with a current Home Care Package as at 30 June 2024. Due to small counts and confidentiality issues, people with missing sex information were excluded from analyses. 

The dementia and cognition supplement does not identify all people with dementia who accessed the Home Care Packages Program as:

• A dementia diagnosis alone did not mean that a home care recipient was eligible to receive the supplement. People with lower levels of cognitive impairment did not attract the supplement so people with less severe dementia may not be eligible for the supplement.
• Home Care recipients who were eligible for the Veterans’ Supplement could not also receive the dementia and cognition supplement.
• People with cognitive impairment associated with conditions other than dementia could also be eligible for the supplement.

Aged Care Funding Instrument (ACFI) data – permanent residential aged care

Up until September 2022 the Aged Care Funding Instrument (ACFI) was used to allocate government funding to aged care providers based on the day-to-day needs of the people in their care. A snapshot of people in permanent residential aged care on 30 June 2020 showed that ACFI data captures almost all people living in permanent residential aged care (97%). The ACFI ceased from 1 October 2022 onwards and was replaced with the Australian National Aged Care Classification (AN-ACC) funding model, which does not capture health condition information. Sections of this report that use ACFI data are reported for 2021–22 with no further updates. The AIHW is working with the Department of Health, Disability and Ageing to determine appropriate methods to capture data on people living with dementia in aged care.

Although the ACFI was a funding instrument and not a diagnosis or comprehensive assessment tool, it collected information on the assessed care needs of people entering permanent residential aged care at the time of their appraisal. It is important to bear in mind that in some instances, not all services received were captured in the ACFI assessment.

People using respite care in a residential aged care home did not have an ACFI assessment unless they also received permanent care. ACFI data did not capture use of residential respite care or certain specialised residential aged care programs, such as the Multi-Purpose Services Program and the National Aboriginal and Torres Strait Islander Flexible Aged Care Program.

Unless otherwise stated, all analyses using ACFI data excluded individuals with missing age and sex information. Individuals with missing information on their geographic location were only excluded from analysis by state/territory, remoteness, or socioeconomic areas.

Analyses on a person’s time in care are based only on the length of their latest episode of care. An episode of care is defined as a continuous service provided under the same program and care type for an individual. An episode of care ends when a person has an admission to hospital, a change in care providers, returns to the community or dies.

Identifying dementia and other health conditions

The ACFI data captured up to 3 behavioural or mental conditions, and up to 3 medical conditions impacting care, which are also considered when determining the level of funding required. Health conditions are coded according to the Aged Care Assessment Program (ACAP) health condition list, and dementia is captured using the codes listed in Table 3.

As the ACFI only allowed for up to 3 medical and 3 mental/behavioural conditions to be recorded, for some people it will not provide a comprehensive list of health conditions for that person.

The analyses presented in this report only use the latest ACFI assessment available for an individual’s latest episode of care, except for dementia status. As dementia is an irreversible health condition, an individual was considered to have dementia if they had a record of dementia in any of their ACFI assessments. Dementia may not be captured in all ACFI assessments if at the time of a given assessment, 3 other mental/behavioural conditions had a bigger impact on a person’s care needs than their dementia.

Measuring care needs

As the ACFI was used to allocate funding, it captured the day-to-day care needs that contributed the most to the cost of providing individual care. Care needs were categorised as ‘nil’, ‘low’, ‘medium’, or ‘high’ based on responses to 12 questions across 3 domains: Activities of daily living, Cognition and behaviour, and Complex health care.

Ratings for each domain were used to determine the level of care funding and to assign care. People with high care ratings in a domain had more severe needs and required extensive assistance and care in that domain, whereas those with a low care rating had less severe needs.

First Nations people and other culturally and linguistically diverse groups

Analysis of permanent residential aged care use among First Nations people is based on whether people were identified as being First Nations (that is, Aboriginal and/or Torres Strait Islanders) or not (that is, non-Indigenous) and excludes cases where the Indigenous status was unknown. ACFI data do not capture information on First Nations-specific residential aged care services, such as the National Aboriginal and Torres Strait Islander Flexible Aged Care Program.

There are limitations to how well people with dementia from culturally and linguistically diverse backgrounds who are living in permanent residential aged care are identifiable in NACDC data. The permanent residential aged care content of this report only presents data and statistics based on whether people were from a non-English speaking background, which is determined based on whether they were born in a country classified as non-English speaking according to the Australian Bureau of Statistics Standard Australian Classification of Countries (SACC).

Rates and target populations

Where presented, rates refer to the number of people in permanent residential aged care as a proportion of the target population for residential aged care programs – that is, those aged 65 and over for all Australians, and those aged 50 and over for First Nations people.

References

AIHW (Australian Institute of Health and Welfare) (2025) National Aged Care Data Clearinghouse: User guide, AIHW, Australian Government, accessed 15 September 2025.

Department of Health, Disability and Ageing (2025) Dementia and cognition supplement for home care, Department of Health, Disability and Ageing, Australian Government, accessed 15 September 2025.

The National Hospital Morbidity Database (NHMD) is a compilation of episode-level records from admitted patient morbidity data collection systems in Australian public and private hospitals.

The data supplied are based on the National Minimum Data Set (NMDS) for Admitted patient care and include demographic, administrative and length of stay data, as well as data on the diagnoses of the patients, the procedures they underwent in hospital and external causes of injury and poisoning. The purpose of the NMDS for Admitted patient care is to collect information about care provided to admitted patients in Australian hospitals. The scope of the NMDS is episodes of care for admitted patients in all public and private acute and psychiatric hospitals, free-standing day hospital facilities, and alcohol and drug treatment centres in Australia. Hospitals operated by the Australian Defence Force, corrections authorities and in Australia’s offshore territories are not in scope but some are included.

The counting unit in the NHMD is a separation, referred to as a hospitalisation in this report. Separation is the term used to refer to the episode of admitted patient care, which can be a total hospital stay (from admission to discharge, transfer or death) or a portion of a hospital stay beginning or ending in a change of type of care (for example, from acute care to rehabilitation).

Although hospital separations data are a valuable source of information about admitted patient care, they have limitations as indicators of ill health. Sick people who are not admitted to hospital are not counted and those who have more than 1 separation in a reference year are counted on each occasion. Therefore, these data count episodes of care, not patients.

The hospital separations data do not include episodes of non-admitted patient care provided in outpatient clinics or emergency departments. However, patients in these settings may be admitted subsequently, with the care provided to them as admitted patients being included in the NHMD.

The years of data used for this report were for the financial years 2014–15 to 2023–24. Data were extracted in May 2025 and small changes may have occurred since this time.

A complete data quality statement for the NHMD is available on the METEOR website.

Dementia-related hospitalisations

Data on diagnoses are recorded using the International Statistical Classification of Diseases and Related Health Problems, 12th Edition, Australian Modification (ICD-10-AM 12th edition).

Hospitalisations due to dementia were defined as hospitalisations where dementia was recorded as the principal diagnosis. Hospitalisations due to or with dementia were defined as hospitalisations with a record of dementia, whether as the principal and/or an additional diagnosis and/or supplementary diagnosis.

High level data are also reported using supplementary codes, which were implemented in admitted patient care data in 2015. These codes are assigned for chronic conditions that are part of the current health status on admission that do not meet criteria for inclusion as a principal or additional diagnosis on the patient’s hospital record.

Refer to Table 4 for relevant ICD-10-AM codes and coding rules for individual dementia types (the total number of hospitalisations for dementia is the sum of hospitalisations for the individual types of dementia).

1. Indicates that the dementia type is valid regardless of whether the hospitalisation also includes this code.
2. Indicates that the dementia type is only valid when the hospitalisation also includes this code.
3. AIHW were advised by the AIHW Dementia Working Group to include hospitalisations with a principal diagnosis of G31 Other degenerative diseases of nervous system, not elsewhere classified and an additional diagnosis of dementia as a hospitalisation with a principal diagnosis of dementia. This was done previously for the AIHW Dementia in Australia 2012 report.

Hospitalisations for newborns without qualified days, hospital boarder and posthumous organ procurement (care types 7.3, 9.0 and 10.0), as well as where age was not reported were excluded from the analysis.

Due to the onset of dementia occurring in older age groups, age-standardised rates were calculated from age 60 and over for the national population and age 40 and over for the First Nations population.

Palliative care hospitalisations were identified using the methodology followed in the AIHW 2021 web report Palliative Care Services in Australia, which is outlined in the Technical notes section of that web report.

Geographical data, including state and remoteness area, refer to the usual place of residence of the patient. Data by Socioeconomic areas is based on the Socio-Economic Indexes for Areas (SEIFA) quintiles assigned by area, using the 2021 Index of Relative Socio-Economic Disadvantage (IRSD) scores.

Due to the small number of hospital separations among First Nations Australians by geographic area, rates of hospital separations with dementia as a principal diagnosis were examined over a 3-year period (2021–22, 2022–23 and 2023–24).

Quality of Indigenous status data

There is some under-identification of First Nations people in the National Hospital Morbidity Database, but data for all states and territories are considered to have adequate First Nations identification from 2010–11 onwards (AIHW 2013). Data extracted for this analysis have not been adjusted for under-identification, so are likely to underestimate the true level of First Nations hospitalisations.

Reference

AIHW (Australian Institute of Health and Welfare) (2013) Indigenous identification in hospital separations data: quality report, AIHW, Australian Government, accessed 16 August 2024.

The National Health Data Hub (NHDH 2021–22) is a longitudinal, person-focussed, de-identified health linkage system, that comprises data from state and territory, Commonwealth and non-government data sources. It is managed under AIHW custodianship.

The NHDH is the only linked asset that brings together hospital data on admitted patient care services, emergency department services and outpatient services for all public (and where available, private) hospitals in New South Wales, Victoria, Queensland, South Australia, Tasmania and the Australian Capital Territory. The asset also contains datasets relating to pharmaceuticals, health service use, aged care, deaths, disability, intensive care and immunisations. At the time of analysis (5 September 2025) data coverage spanned from 1 January 1997 to 30 June 2024, though temporal scope varies by dataset.

Classification of dementia

A person was included in the NHDH dementia cohort if they had at least one of the following in the NHDH between 1 July 2016 to 30 June 2022:

• A dementia-specific medication dispensed through the PBS / RPBS.
• A principal or additional diagnosis of dementia in an emergency department (ED) presentation or hospital admission.
• A supplementary chronic code of dementia in a hospital admission.
• A record of dementia in datasets from the National Aged Care Data Clearinghouse (NACDC) including the Aged Care Assessment Program (ACAP) and National Screening Assessment Form (NSAF).

A person could also be included in the NHDH dementia cohort if they were recorded as having dementia as their underlying or additional cause of death between 1 July 2021 and 31 December 2022.

The NHDH dementia cohort was also restricted to people who had at least one Medicare Benefits Schedule (MBS) record during the financial year of interest (2021–22) and to people who were not missing age information.

Note that the NHDH dementia cohort may not be representative of all people living with dementia across Australia, with some people not accessing services offered by the included NHDH data sources, or not identified as having dementia in these data sources.

Table 5 outlines the codes used in each individual dataset to identify dementia and the classification system used in each dataset.

Note: ICD-10 refers to the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision. ICD-10-AM refers to ICD-10, Australian Modification; ICD-9-CM refers to the ICD, Ninth Revision, Clinical Modification; SNOMED CT-AU EDRS refers to the Systematized Nomenclature of Medicine - Clinical Terms - Australian version (Emergency Department Reference Set).

Population characteristics

The use of health services often changes after a person enters permanent residential aged care. To partly account for these changes the dementia cohort was split into 2 study groups:

• People living in cared accommodation includes anyone living in a permanent residential aged care home for all, or part of the year in 2021–22.
• People living in the community includes anyone who did not live in a residential aged care home as a permanent resident at any time in the year in 2021–22. This may include people who used respite services in a residential aged care home, as well as people who were living in other supported accommodation. 

Direct comparison between these groups is not recommended as people with dementia have a unique pattern of health service use in their last year of life and often die in residential aged care. These factors may influence patterns observed and should be considered when exploring the results in this report. For more information, see Patterns of health service use by people with dementia in their last year of life: New South Wales and Victoria.

The use of health services is also likely to change depending on a person’s age and sex. A person’s age was calculated at 1 July 2021, with their birth date assigned to the middle of the month. Birth month, birth year and sex were derived from the NHDH patient demography file.

Medicare Benefits Schedule

The Medicare Benefits Schedule (MBS) data collection contains claims data for Medicare services subsidised by the Australian Government. This includes services provided by community-based health professionals, including general practitioners (GPs), medical specialists and allied health professionals.

People may receive primary care services in ways that are not captured in MBS data, including services delivered under Department of Veterans’ Affairs arrangements; services provided through hospitals; services provided under a state-funded service; dementia specific services such as the Dementia Behaviour Management Advisory Service or Severe Behaviour Response Teams; and services provided by a salaried GP or any other salaried medical officer arrangement.

MBS events were grouped according to the MBS codes in Table 6.

Note: BTOS = Broad Type of Service. Telehealth, MBS group M18 and A40, were introduced in March 2020 and June 2021 respectively.

References

AIHW (Australian Institute of Health and Welfare) (2021–22) National Health Data Hub, aihw.gov.au, accessed 5 September 2025.

Data on dementia deaths were derived from the National Mortality Database (NMD) and analyses were based on the years 2009–2023. The NMD is maintained by the AIHW and holds records for deaths in Australia from 1964. In addition to causes of death, the NMD includes some information about the characteristics of each deceased person, such as sex, age at death, area of usual residence and Indigenous status. Cause of death data are sourced from the Registrars of Births, Deaths and Marriages in each state and territory, and the National Coronial Information System. They are compiled and coded by the Australian Bureau of Statistics (ABS) using the latest version of the International Statistical Classification of Diseases and Related Health Problems (ICD-10 for this report), an international standard agreed by the World Health Organization for defining and reporting causes of death. 

For more information about Australian mortality data, including scope and coverage of the collection and a quality declaration, please refer to Deaths, Australia and Causes of death, Australia available from the ABS website. 

Dementia deaths

Cause of death information is derived from conditions listed on Part I and Part II of a death certificate. Deaths due to dementia are deaths where dementia was recorded as the underlying cause of death, that is, the disease or injury that initiated the train of events leading directly to death.

The NMD also contains information on other associated causes of death. These are all causes listed on the death certificate, other than the underlying cause of death, which were instrumental or significantly contributed to the death. 

• Deaths due to dementia includes deaths where dementia was listed as the underlying cause of death.
• Deaths with dementia are defined in this report as deaths where dementia was the associated cause of death (excluding deaths where dementia was listed as both the underlying and associated cause of death). Deaths due to or with dementia refer to all dementia-related deaths, where dementia was recorded as the underlying cause of death or associated cause of death.

This report uses an expanded list of International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) codes to define dementia related deaths, with the aim of better capturing rarer dementia death types (see Table 7). This expanded list was developed under the guidance of AIHW’s Dementia Expert Advisory Group. Therefore, the AIHW dementia death estimates reported here differ to the Australian Bureau of Statistics (ABS) estimates. 

Both AIHW and ABS include Alzheimer’s disease, vascular dementia, and unspecified dementia when reporting dementia related deaths. The AIHW list also includes other dementias (for example, Lewy body dementia). The AIHW and the ABS are aware of differences in reporting and are working together to align reporting where practicable.

Note that not all dementia types are reported separately in the report, due to confidentiality issues arising from small numbers.

Note: According to ICD-10 coding rules, the codes of F00 Dementia in Alzheimer’s disease and F05.1 delirium superimposed on dementia cannot be assigned as an underlying cause of death but can be used to capture additional causes of death.

Analyses are based on the date on which the death was registered and are compiled based on the state/territory of usual residence. The analyses exclude deaths for which the date of death, sex, or age, was not reported. Deaths registered in 2020 and earlier are based on the final version of cause of death data. Deaths registered in 2021 are based on the revised version. Deaths registered in 2022 and 2023 are based on the preliminary version. Revised and preliminary versions are subject to further revision by the ABS. Deaths related to dementia in 2021, 2022 and 2023 are likely an undercount as a result of missing late registration.

This report presents deaths in terms of crude rate, age-specific rate and age-standardised rates due to dementia. Age-standardised rates enable comparisons to be made between populations that have different age structures and especially for diseases that vary with age. Age-standardised rates are calculated using the direct method, with 5-year age groups, and use the 2001 Australian Standard Population. Geography is based on area of usual residence – Statistical Area Level 2 (SA2). Unknown/missing includes deaths where place of usual residence was overseas, no fixed abode, offshore and migratory, and undefined.

First Nations deaths

Analyses of deaths among First Nations people rely on the deceased person being identified as a First Nations person (that is, Aboriginal and/or Torres Strait Islander). This information is typically included in their death registration statement (usually completed by the funeral director and family) but can also be included in a medical certificate cause of death (completed by a doctor), or for a small number of people in a dispensation from a coroner. Analyses excluded deaths where the person’s Indigenous status was unknown.

Numbers and rates are reported for 5 jurisdictions separately and combined – New South Wales, Queensland, Western Australia, South Australia and the Northern Territory. These jurisdictions are considered to have adequate levels of Indigenous identification in mortality data. Numbers of deaths are also reported for Victoria, Tasmania, and the Australian Capital Territory, as well as nationally, however these data should be interpreted with caution due to concerns around the quality of Indigenous identification in those 3 jurisdictions. The number of First Nations Australians who have died due to dementia is presented over multiple years as the numbers are small when disaggregated by sex, age and geographic area.

Childhood dementia deaths

Childhood dementia deaths have been reported in Dementia in Australia since September 2024. In consultation with an expert from the Childhood Dementia Initiative, mortality statistics of available childhood dementia specific ICD-10 codes were extracted from the National Mortality Database. 

See Childhood dementia for more information on ICD-10 codes included in the analysis and why the statistics should be interpreted with caution.

Limitations

The number of people with dementia recorded on their death certificate, as presented in this report, is unlikely to include every person with dementia who died during the reporting period, even when dementia contributed to their death. One recent study using linked data showed that without linking to other datasets, mortality data only captured 31% of Australian women with dementia (Waller et al. 2017), while in another study, mortality data captured 67% of people with dementia who died in New South Wales and Victoria in 2013 (AIHW 2020). Changes in coding and certification practices over time have likely improved the accuracy of the attribution of deaths due to or with dementia in recent years (ABS 2015).

Statistics based on Indigenous status should be interpreted with caution, as the identification of First Nations people is often incomplete, or is inconsistently reported across administrative data sets, including in the NMD (AIHW 2019). This report does not apply adjustments to account for the under-identification of First Nations people in the NMD but does group deaths statistics for First Nations people across 3 years of data to provide more robust estimates and avoid confidentiality issues related to small numbers.

References

ABS (Australian Bureau of Statistics) (2015) Causes of death, Australia, 2013, ABS Australian Government, accessed 9 December 2022.

AIHW (Australian Institute of Health and Welfare) (2019) Improving Indigenous identification in mortality estimates, AIHW, Australian Government, accessed 12 December 2022.

AIHW (2020) Patterns of health service use by people with dementia in their last year of life: New South Wales and Victoria, AIHW, Australian Government, accessed 12 December 2022.  

Becker R, Silvi J, Ma Fat D, L'Hours A, & Laurenti R (2006) ‘A method for deriving leading causes of death’, Bulletin of the World Health Organization, 84, 297–304, doi:10.2471/blt.05.028670.

Waller M, Mishra G, and Dobson A (2017) ‘Estimating the prevalence of dementia using multiple linked administrative health records and capture-recapture methodology’, Emerging Themes in Epidemiology, 14(3), doi:10.1186/s12982-017-0057-3.

The Pharmaceutical Benefits Scheme (PBS) database contains medications eligible for government subsidy dispensed under the PBS. The PBS database also includes medications supplied under the Repatriation Pharmaceutical Benefits Scheme (RPBS, available for eligible veterans, war widows/widowers and their dependants). The PBS database does not contain data on the dispensing of privately prescribed medications, medications to public hospital in-patients and over-the-counter medications.

In this report, analyses were limited to people aged 30 and over who were dispensed at least one dementia-specific medication under the PBS/RPBS between 1 July 2023 and 30 June 2024, as recorded in the PBS database. The statistics presented in the report refer to people who were dispensed medications, which may not equate to the number of prescriptions for medications prescribed by medical professionals (as not all prescriptions are dispensed). 

The following should be considered when interpreting prescriptions data presented in this report:

• A very small proportion of records with missing patient identification, age and sex information were excluded from the analysis.
• As a person’s age (and subsequent age group) will change in a single year, a person’s age at the midpoint of the year was used as their age for the entire year.
• As a person may move between states and territories in a single year, the state or territory recorded in a person’s last record in the year was used as their geographical location for the entire year.
• As people may be prescribed multiple dementia-specific medication by different medical specialists in a single year, people may be counted multiple times in some analyses.
• People who were dispensed dementia-specific medication for the first time includes people who had not been dispensed a dementia-specific medication since 2013–14.

Anatomical Therapeutic Chemical (ATC) Classification

PBS items were mapped to the Anatomical Therapeutic Chemical (ATC) Classification, a classification system for medicines maintained by the World Health Organization. The ATC classification groups medicines according to the body organ or system on which they act, and their therapeutic and chemical characteristics. Medicines are given an ATC classification in the Schedule of Pharmaceutical Benefits according to their main therapeutic use in Australia as registered with the Therapeutic Goods Administration and listed on the PBS. More information on the ATC classification system can be found at The World Health Organization website.

Dementia-specific medications included in this report and their corresponding ATC codes include:

• N06DA02 – Donepezil
• N06DA03 – Rivastigmine
• N06DA04 – Galantamine
• N06DX01 – Memantine.

Table 8 shows all the medications presented in this report by ATC1 level (for example, Alimentary tract and metabolism) and by ATC2 level (for example, Drugs for acid related disorders).

Calculations of Defined Daily Doses (DDDs)

DDDs were calculated as follows for each dementia-specific medication:

• Units are the individual forms of the dementia-specific medication, such as tablets or patches
• DDD amounts are assigned to medicines with an allocated ATC code. Only one DDD is assigned per ATC code and route of drug administration. For more information on the DDDs assigned to dementia-specific medications, refer to the WHOCC – ATC/DDD Index 2024.

The Survey of Disability, Ageing and Carers (SDAC) is a national survey run by the Australian Bureau of Statistics (ABS) that has been collecting information since 1981.

The survey collects detailed information from three key populations:

• People with disability – people who have at least one limitation, restriction or impairment, which has lasted, or is likely to last, for at least 6 months and restricts everyday activities.
• People aged 65 years and over.
• Carers – people who provide unpaid informal assistance on a regular basis to people with a disability or people aged 65 years and over.

The information presented in this report was sourced from the most recent survey, conducted in 2022. Previous surveys were conducted in 1981, 1988, 1993, 1998, 2003, 2009, 2012, 2015 and 2018.

Survey collection

The 2022 SDAC was conducted in two components based on a person’s place of residence:

• Household component – people living in private dwellings (such as houses, flats, apartments, townhouses), as well as self-care components of retirement villages.
• Cared accommodation component – people living in residential aged care homes, hospitals and other ‘homes’ who had been, or were expected to be, living there, or in another health establishment, for at least three months.

There were 43,026 people included in the 2022 SDAC – 33,764 people from the household component and 9,262 people living in cared accommodation.

Households included in the survey were selected at random, and information was collected about all usual residents. The household component of the survey could be completed either online or through a personal interview. Residents identified as belonging to the key populations listed above were required to participate though a personal interview. Proxy interviews were done for children under 15 years of age, children aged 15–17 whose parent or guardian did not agree to them being personally interviewed and people who were unable to answer for themselves due to their disability (illness, impairment, injury or language problems). Respondents who completed the survey online did not have access to an ABS interviewer to ask clarifying questions. In this report, people with dementia who were included in the household component are referred to as ‘living in the community’.

Establishments included in the survey must have been providing cared accommodation for at least three months. Those with more long-term occupants had a higher chance of being selected in the sample. Within each chosen establishment occupants were randomly selected to participate in the survey. The cared accommodation component was administered via an online questionnaire. Information collected was based on staff member knowledge of residents and from clinical and administrative records.

Further information on the 2022 SDAC method of collection can be found at: Disability, Ageing and Carers, Australia: Summary of Findings methodology.

Reporting of dementia

For this report, a person was considered to have dementia if they were recorded as having a confirmed diagnosis through the new questions about dementia diagnosis that were introduced to the 2022 SDAC. People who reported having suspected dementia are reported on separately.

The 2022 SDAC also collects information on long-term health conditions. A long-term health condition is defined as a medical condition (illness, injury or disability) that has lasted or is expected to last for 6 months. Most people who reported having diagnosed dementia (84%) also reported having dementia as a long-term health condition:

• Dementia – SDAC code 140101
• Alzheimer’s disease – SDAC code 150403
• Dementia with Lewy bodies – SDAC code 150402
• Frontotemporal dementia – SDAC code 150401.

Around 1 in 4 (26%) people who reported having dementia as a long-term health condition did not report having a confirmed diagnosis of dementia. These individuals were not considered to have dementia in this report but are reported as having suspected dementia where applicable.

As the SDAC does not perform clinical assessment of survey respondents, it is acknowledged the SDAC will underestimate people in the early stages of dementia, particularly those in the community, who have not received a formal diagnosis. In addition, some survey respondents may choose not to disclose their dementia. For more information on SDAC’s limitations, see What are the limitations of the available data?

Limitations 

The SDAC captures information on a persons’ limitations. Limitations were assessed in terms of what a persons’ level of difficulty was in undertaking each of several tasks, their need for assistance in each task and whether aids or equipment were used. These tasks were grouped into either core-activities (self-care, mobility or communication related tasks) or other activities. For more information on the tasks used to assess a person’s limitations, see Disability, Ageing and Carers, Australia: Summary of Findings methodology.

Level of disability

In the 2022 SDAC a person was considered to have a disability if they had limitations that restricted their ability to carry out core or other activities. These limitations must have lasted, or be expected to last, for 6 months or more. A person may also be considered to have a disability if they experience difficulties in other areas of daily life, such as schooling or employment. 

A person’s level of disability was classified into 4 groups based on their experience in carrying out core activities, these include: 

• Mild limitations: the person needs no help and has no difficulty with any of the core activity tasks but uses aids or has limitations.
• Moderate limitations: the person needs no help but has difficulty with a core activity task.
• Severe limitations: the person sometimes needs help or has difficulty with a core activity task.
• Profound limitations: the person is unable to do, or always needs help with, a core activity task.

A person's overall level of core activity limitation is determined by their highest level of limitation in these activities.

Reporting on primary carers

This report focuses on information from the SDAC on primary carers of people with dementia.

The SDAC defines a primary carer as the person aged 15 or over who provides the most informal, ongoing assistance with one or more core activities (mobility, self-care and communication) for a person with disability. The assistance had to be ongoing, or likely to be ongoing, for at least 6 months.

Primary carers exclude people who provide formal assistance (on a paid basis, usually associated with an organisation).

In the 2022 SDAC, primary carers could live in different households to the people they care for, but information about primary carers was only collected if they lived in households in the SDAC sample. The SDAC does not capture information about people who provide informal (unpaid) care to those with dementia living in residential aged care homes.

Reference

Australian Bureau of Statistics (2025) Disability, Ageing and Carers, Australia: Summary of Findings methodology, ABS Australian Government, accessed 12 March 2025 

The 2021 Census was conducted on 10 August 2021. However, people could complete the Census between July and September 2021. The scope of the Census is every person present in Australia on Census night residing in private and non-private dwellings, except for:

1. people in Australian external territories
2. foreign diplomats and their families
3. foreign crew members on ships who remain on the ship and do not undertake migration formalities
4. people leaving an Australian port for an overseas destination before midnight on Census night.

The 2021 Census data collected data about 18,436,395 people aged 15 years and over living in Australia in occupied private dwellings on Census Night. The 2021 Census included a new health topic to capture data about Australians reporting selected long-term health conditions. This allows for the analysis of long-term health conditions data at more detailed geographic and sub-population levels than ABS health surveys can support.
For more information on the 2021 Census, see About the Census.

Data in this report are based on AIHW’s analysis of National Disability Insurance Scheme (NDIS) data accessed through the Person Level Integrated Data Asset (PLIDA) in the Australian Bureau of Statistics’ DataLab. The analysis used data extracts available in PLIDA as of August 2025, and data presented here may differ from other reports due to variations in data extraction timing.

The NDIS funds reasonable and necessary supports for people with permanent and significant disability to participate in everyday life (NDIA 2025a).

To be eligible for NDIS funding, participants must be under 65 years of age at the time of application, be an Australian citizen or permanent resident, and live in Australia. They must also have met the disability or early intervention requirements.

• Disability requirements: the person has one or more impairments that are, or are likely to be, permanent and that substantially impact their ability to carry out daily activities, work, study, or participate socially. Ongoing support is likely to be needed throughout their lifetime.
• Early intervention requirements: the person has one or more impairments that are, or are likely to be, permanent, and early intervention supports through the NDIS are likely to improve their functional capacity. Lifetime support is not expected to be required (NDIA 2025b). 

Childhood and younger onset dementia

People with childhood or younger onset dementia may be eligible for support through the NDIS. However, not all people with these conditions access NDIS supports, either because they access different supports or no supports at all.

This report identifies people with younger onset dementia based on the ‘ICD classification of primary disability’, using the following ICD-10-AM codes: F00 Alzheimer’s, F03 Unspecified dementia, F03.9 Dementia- Rapidly progressing, G30.0 Dementia – Early onset, G31.0 Frontotemporal, G31.83 Neurocognitive disorder with Lewy Bodies. The cohort was limited to people whose age at first approval of their NDIS plan was between 30 and 64 years. 

People with Rett syndrome were identified using the ICD-10-AM code F84.2 Rett syndrome, while those with Huntington’s disease were identified using the code G10 Huntington disease. Individuals were classified as having Juvenile Huntington’s disease if their age at first NDIS plan approval was under 20 years. 

References

NDIA (National Disability Insurance Agency) (2025a) Reasonable and necessary supports, NDIA, Australian Government, accessed 10 September 2025.

NDIA (2025b) Applying to the NDIS, NDIA, Australian Government, accessed 10 September 2025.