Data sources
The Australian Burden of Disease Study (ABDS) 2023 provides projected estimates of burden of disease for 220 diseases and injuries for the total population for 2023. The study used trend analysis techniques to project increases in sex- and age-specific rates in disease burden. Full analysis techniques can be found in the ABDS technical notes.
The Australian Burden of Disease Study (ABDS) 2018 provides First Nations-specific burden of disease estimates for the total population for 2018, 2015, 2011 and 2003 and for the First Nations population for 2018, 2011 and 2003, as well as estimates of the disease burden attributable to specific risk factors. The study utilised and adapted methods developed as part of the previous ABDS 2015 and 2011 (AIHW 2019; AIHW 2016). The ABDS uses Australian data sources and adapts the methods from global studies to produce estimates that are relevant to the Australian context (AIHW 2016).
The fatal burden estimates for dementia were derived from the AIHW National Mortality Database and are considered to be of 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 a number of epidemiological studies. The prevalence of exposure to each risk factor was derived from a variety of Australian-specific data sources.
References
AIHW (Australian Institute of Health and Welfare) (2016). Australian Burden of Disease Study: impact and causes of illness and death in Aboriginal and Torres Strait Islander people 2011, catalogue number BOD 7, AIHW, Australian Government, accessed 12 December 2022.
AIHW (2019) Australian Burden of Disease Study: methods and supplementary material 2015, AIHW, Australian Government, accessed 15 December 2022.
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 of, for example, 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 2023 are formulated on the basis of past demographic trends projected into the future.
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 assessments and a number of 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 and Aged Care and are sourced from the Human Services payment systems, centralised client record systems and minimum datasets.
This report presents information from two key datasets as part of the NACDC – data from the National Screening and Assessment Form (NSAF) and from the Aged Care Funding Instrument (ACFI).
National Screening and Assessment Form data – aged care assessments
Following an initial screening through the My Aged Care system – the starting point for accessing aged care services subsidised by the Government – people are directed to either a home support assessment (conducted by the Regional Assessment Service) or a comprehensive assessment (conducted by an Aged Care Assessment Team). These processes assess people’s circumstances and care needs and, where relevant, approve them for aged care services. The National Screening and Assessment Form (NSAF) captures the information from these assessments.
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 assumed to be identical for all individuals associated with the same assessment.
- 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 3 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 First Nations status were not included in counts of First Nations people and non-Indigenous Australians.
NSAF code | Description |
---|---|
0500, 0501, 0502, 0503, 0504 | Alzheimer’s disease |
0510, 0511, 0512, 0513, 0514, 0515, 0516 | Vascular dementia |
0521 | Fronto-temporal dementia |
0584 | Lewy Body dementia |
0532 | Unspecified dementia (includes presenile & senile dementia) |
0542 | Delirium superimposed on dementia |
0520, 0522, 0523, 0524, 0525, 0526 | Dementia in other diseases classified elsewhere (such as Creutzfeldt-Jakob, Huntington’s disease, Parkinson’s disease) |
0530, 0531 | Other dementias |
0585 | Cognitive impairment not otherwise specified(a) |
a. People who had cognitive impairment recorded and no record of dementia were not counted as having dementia but were reported separately.
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). Data in this section will no longer be updated.
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 facility did not have an ACFI assessment unless they also received permanent care at some point. Therefore, information on residential respite care using the ACFI data is not presented. Further, the ACFI data did not capture people who are in 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 a long 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 4.
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, with the exception of 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.
ACAP code | Description |
---|---|
0500 | Dementia in Alzheimer’s disease (includes early onset <65 years, late onset >65 years, atypical or mixed type, unspecified) |
0510 | Vascular dementia (includes acute onset, multi-infarct, subcortical, mixed cortical & subcortical, other vascular, unspecified) |
0520 | Dementia in other diseases (includes Pick’s, Creutzfeldt-Jakob, Huntington’s, Parkinson’s, HIV, Lewy Body, other) |
0530 | Other dementia not elsewhere classified or not otherwise specified (includes alcoholic, presenile & senile, unspecified) |
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 (Aboriginal and/or Torres Strait Islanders) or not (non-Indigenous), and excludes cases where the First Nations 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.
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 off-shore 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 2013–14 to 2022–23. Data were extracted in May 2023 and small changes may have occurred since this time.
A complete data quality statement for the NHMD is available online at METEOR website.
Dementia-related hospitalisations
Data on diagnoses are recorded using the International Statistical Classification of Diseases and Related Health Problems, 11th Edition, Australian Modification (ICD-10-AM 11th edn).
Hospitalisations due to dementia were defined as hospitalisations where dementia was recorded as the principal diagnosis. Hospitalisations with dementia were defined as hospitalisations with at least 1 diagnosis of dementia, recorded as a principal and/or additional 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 5 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).
Dementia type | ICD-10-AM diagnosis code |
---|---|
Alzheimer’s disease | F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9 |
Vascular dementia | F01.0, F01.1, F01.2, F01.3, F01.8, F01.9 |
Fronto-temporal dementia | F02.0 and G31.0(a) |
Dementia in Creutzfeldt-Jakob disease | F02.1 and A81.0(a) |
Dementia in Huntington’s disease | F02.2 and G10(a) |
Dementia in Parkinson’s disease | F02.3 and G20(a) |
Dementia in human immunodeficiency virus (HIV) disease | F02.4 and B22(a) |
Lewy Body dementia | F02.8 and G31.3(b) |
Dementia in other diseases (remainder) | F02.8 and not G31.3 F05.1 and F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9, F01.0, F01.1, F01.2, F01.3, F01.8, F01.9, F02.0, F02.1, F02.2, F02.3, F02.4, F02.8, F03, F10.7, F13.7, F18.7(b) F03 and F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9, F01.0, F01.1, F01.2, F01.3, F01.8, F01.9, F02.0, F02.1, F02.2, F02.3, F02.4, F02.8, F10.7, F13.7, F18.7(b) |
Dementia due to psychoactive substance use | F10.7, F13.7, F18.7 |
Unspecified dementia | F03 and not F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9, F01.0, F01.1, F01.2, F01.3, F01.8, F01.9, F02.0, F02.1, F02.2, F02.3, F02.4, F02.8, F10.7, F13.7, F18.7 |
Delirium superimposed on dementia | F05.1 and not F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9, F01.0, F01.1, F01.2, F01.3, F01.8, F01.9, F02.0, F02.1, F02.2, F02.3, F02.4, F02.8, F03, F10.7, F13.7, F18.7 |
Other degenerative diseases of nervous system, not elsewhere classified(c) | G31 and F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9, F01.0, F01.1, F01.2, F01.3, F01.8, F01.9, F02.0, F02.1, F02.2, F02.3, F02.4, F02.8, F03, F05.1, F10.7, F13.7, F18.7 |
Dementia (including Alzheimer's disease) | U79.1 |
- Indicates that the dementia type is valid regardless of whether the hospitalisation also includes this code.
- Indicates that the dementia type is only valid when the hospitalisation also includes this code.
- 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 or sex was recorded as intersex, indeterminate, not stated or inadequately described 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 people 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 information 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 2016 Index of Relative Socio-Economic Disadvantage (IRSD) scores.
Due to the small number of hospital separations among Indigenous Australians by geographic area, rates of hospital separations with dementia as a principal diagnosis were examined over a 3-year period (2020–21, 2021–22 and 2022-23). Hospital separations with more than 3,000 bed days were excluded from the analysis of hospital separations among First Nations people.
Quality of First Nations 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 Indigenous hospitalisations.
Estimates of hospital separations of First Nations people with dementia are not published for Tasmania and the Australian Capital Territory due to small numbers.
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), previously referred to as the National Integrated Health Services Information (NIHSI) analytical asset, is an established enduring linked data asset managed under the custodianship of the AIHW, available for approved projects and analysts from the AIHW and participating jurisdictions.
This data asset contains linked data from 2010–11 to 2020–21 on:
- admitted patient care services (in all public and, where available, private hospitals), emergency department services and outpatient services in public hospitals for New South Wales, Victoria, South Australia and Tasmania, sourced from the Admitted Patient Care Database and the National Non-Admitted Patient Emergency Department Care Database
- Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme (RPBS) national data
- Medicare Benefits Schedule (MBS) national data
- residential aged care national data from the National Aged Care Data Clearinghouse
- National Death Index data (contains data up to 31 December 2021).
Classification of dementia
The analysis presented in the Primary health care services webpage compares the use of MBS services by people who had dementia with people who did not, based on identification (or lack thereof) of a dementia diagnosis evident in NIHSI version 3.0.
A person was identified as having dementia if they were aged 30 or over and had at least one of the following in the NIHSI between 1 July 2010 and June 30 2021:
- a dementia-specific medication dispensed through the PBS / RPBS
- a principal or additional diagnosis of dementia in an emergency department (ED) presentation or public hospital admission
- a supplementary chronic code of dementia in a public hospital admission
- a record of dementia in an Aged Care Funding Instrument (ACFI) assessment.
The study cohort was also restricted to people who were:
- alive at 30 June 2021
- recorded in the NIHSI as using a health service in 2020–21
- not missing age, sex and/or geography information
- 30 years or over at their first service event in 2020–21.
Table 6 outlines the codes used in each individual dataset to identify dementia and the classification system used in each dataset.
Data source | Classification and dementia-specific codes |
---|---|
Aged Care Funding Instrument | Aged Care Assessment Program codes: 0500, 0510, 0520, 0530 |
National Death Index | ICD-10 Underlying or associated cause of death codes: F00, F01, F02, F03, F05.1, F10.7, F13.7, F18.7, G30, G31.0, G31.8 |
Admitted patient care | ICD-10-AM diagnosis codes: F00, F01, F02, F03, F05.1, F10.7, F13.7, F18.7, G30 Chronic condition supplementary code U791 |
Emergency department presentations | ICD-10-AM diagnosis codes: F00, F01, F02, F03, F05.1, F10.7, F13.7, F18.7, G30, U791 ICD-9-CM diagnosis codes: 290.0, 290.1, 290.10, 290.11, 290.12, 290.13, 290.2, 290.20, 290.21, 290.3, 290.4, 290.40, 290.41, 290.42, 290.43, 290.8, 290.9, 291.2, 294.1, 294.10, 294.11, 294.2, 294.20, 294.21, 331.0 SNOMED CT-AU EDRS diagnosis codes: 52448006, 12348006, 15662003, 26929004, 191461002 |
Pharmaceutical Benefits Scheme | Anatomical Therapeutic Chemical Classification codes: N06DA02 (donepezil), N06DA03 (rivastigmine), N06DA04 (galantamine) N06DX01 (memantine) |
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).
Age and sex
The cohort included people aged 30 and over. Younger people were out of scope for this study because people aged under 30 with dementia (including childhood dementias) are likely to use different services than those over 30 years.
Age at the first service event in 2020–21 was calculated from the “age at event zero” variable in the NIHSI patient demography file.
Sex was derived from the NIHSI patient demography file.
Geographical region of residence
State/territory is necessary in order to ensure 3 or more state/territories are contributing to a cell count, and to ensure one or two state/territories do not dominate the cell count (85/90 dominance rule). This is a requirement when using NIHSI data.
State/territory information is based on which state/territory people lived in at the time of their first service event in 2020–21, not where they received services. People are likely to have used services outside of their state/territory of residence.
Place of residence
The use of health services changes after a person enters permanent residential aged care (PRAC). To partly account for these changes, the dementia study cohort was split into 2 study groups:
People living in the community: people who were living in the community for all of 2020–21. This may include people who used residential respite care, people who were living in other supported accommodation, and people who were living in residential aged care facilities not included in the NIHSI.
People living in residential aged care: people who were living in permanent residential aged care for all or part of 2020–21.
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. In-hospital MBS attendances were excluded from all analyses.
MBS events were grouped according to the MBS codes in Table 7.
Terminology used in this study | MBS code |
---|---|
GP attendance (total) | BTOS: 0101, 0102, 0103 |
GP chronic disease management service | BTOS: 0102 Subgroup: A15.1, A40.13, A40.14 or items: 229 – 233, 93469, 93475 |
Medication management review | BTOS: 0102 Items: 245, 249, 900, 903 |
Specialist attendance (total) | BTOS: 0200 |
General medicine attendance | BTOS: 0200 Key registered speciality: 2, 82 |
Geriatric medicine attendance | BTOS: 0200 Key registered speciality: 16, 96 |
Geriatrician referred plan | BTOS: 0200 Key registered speciality: 16, 96 Item: 141, 143, 145, 147 Subgroup: A40.31 |
Neurology attendance | BTOS: 0200 Key registered speciality: 9, 89 |
Psychiatry attendance | BTOS: 0200 Key registered speciality: 56, 99, 409 Group A08 Subgroups: A40.06 and A40.09 Items: 00855, 00857, 00858, 00861, 00864,00866, 90260, 90262, 90266, 90268, 92162, 92166. |
Ophthalmology attendance | BTOS: 0200 Key registered speciality: 54, 406 |
Cardiology attendance | BTOS: 0200 Key registered speciality: 4, 84 |
Dermatology attendance | BTOS: 0200 Key registered speciality: 52, 401 |
General surgery attendance | BTOS: 0200 Key registered speciality: 31, 32, 411 |
Intensive care attendance | BTOS: 0200 Key registered speciality: 18, 30, 98, 402, 417 |
Nursing and Aboriginal health worker services (total) | BTOS: 0110 and MBS group M14 and MBS subgroup M18.05 and M18.10 |
Practice nurse or Aboriginal health worker | BTOS: 0110 |
Nurse practitioner | MBS group M14 and MBS subgroup M18.05 and M18.10 |
Allied health attendances (total) | BTOS: 0150, 0900 |
Optometry | BTOS: 0900 |
Podiatry | BTOS: 0150 Items 10962, 81340, 93509, 93532, 93554, 93587 |
Mental health care | BTOS: 0150 MBS group: M6, M7, M17, M25, M26, M27, M28 MBS subgroup: M16.2, M16.3, M16.5, M18.1, M18.2, M18.3, M18.4, M18.6, M18.7, M18.8, M18.9 Items: 10956, 10968, 81325, 81355, 82000, 82015, 93076, 93079, 93084, 93087, 93100, 93103, 93110, 93113, 93118, 93121, 93134, 93137, 93512, 93535, 93557, 93590 |
Physical health care | BTOS: 0150 Items: 10953, 10960, 10964, 10966, 81110, 81115, 81315, 81335, 81345, 81350, 93504, 93508, 93510, 93511, 93518, 93520, 93527, 93531, 93533, 93534, 93549, 93553, 93555, 93556, 93571, 93573, 93582, 93586, 93588, 93589, 93607, 93614 |
Diagnostic imaging | BTOS: 0600 |
Pathology | BTOS: 0501, 0502 |
Operations | BTOS: 0400, 0700, 0800 |
Other | BTOS: 0300, 1000 BTOS: 1100 and MBS group not M14 and MBS subgroup not M18.05 or M18.10 |
Note: BTOS = Broad Type of Service. Telehealth, MBS group M18 and A40, were introduced in March 2020 and June 2021 respectively.
Key data considerations of the Primary health care services analysis
For people living in residential aged care, the Aged Care Funding Instrument was used to assess their care needs to determine government funding to care providers and includes information on dementia status. This means that more people living with dementia in residential aged care will have a record of dementia in the linked data than those living in the community. This should be borne in mind when exploring the results in this report, and direct comparisons between people living with dementia in the community and in residential aged care are not recommended.
As people with dementia have a unique pattern of health service use in their last year of life, the analysis focused on the use of MBS services by people who were alive at 30 June 2021. This exclusion has a larger impact on people in residential aged care, particularly those with dementia, as people with dementia often die in care. Refer to the AIHW report Patterns of health service use by people with dementia in their last year of life for more information.
The analysis included people aged 30 and over. Younger people were out of scope for this study because the number of people aged under 30 living with dementia (including childhood dementias) were too small to analyse separately, and people are likely to use different services.
Data on dementia deaths were derived from the National Mortality Database (NMD) and analyses were based on the years 2009–2022. The NMD is maintained by the AIHW and holds records for deaths in Australia from 1964, and comprises information about causes of death and other characteristics of the person, such as sex, age at death, area of usual residence and First Nations 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 (UCOD), that is, the disease or injury that initiated the train of events leading directly to death, or the circumstances of the accident or violence that produced the fatal injury.
The NMD also contains information on other associated causes of death (ACOD). 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 with dementia refer to deaths where dementia was recorded as the UCOD or ACOD.
This report uses an expanded list of death codes attributed to dementia (that is, relative to the usual dementia codes used to report on deaths – G30, F01, and F03), with the aim of better capturing rarer dementia death types and mixed dementia (see Table 8). The AIHW created this expanded list in consultation with the AIHW Dementia Working Group and the ABS. Note that not all dementia types are reported separately in the report, due to confidentiality issues arising from small numbers.
Dementia type | Updated ICD-10 diagnosis codes: Underlying causes of deaths (UCODs) | Updated ICD-10 diagnosis codes: Associated causes of deaths (ACODs) |
---|---|---|
Alzheimer’s disease | G30.0, G30.1, G30.8, G30.9 | F00.0, F00.1, F00.2, F00.9, G30.0, G30.1, G30.8, G30.9 |
Vascular dementia | F01.0, F01.1, F01.2, F01.3, F01.8, F01.9 | F01.0, F01.1, F01.2, F01.3, F01.8, F01.9 |
Fronto-temporal dementia | G31.0 | G31.0 |
Lewy body dementia | G31.8 | G31.8 |
Dementia in Creutzfeldt-Jakob disease | N/A | UCOD of A81.0 and ACOD of F03 (Unspecified dementia) |
Dementia in Huntington's disease | N/A | UCOD of G10 and ACOD of F03 (Unspecified dementia) |
Dementia in Parkinson's disease | N/A | UCOD of G20 and ACOD of F03 (Unspecified dementia) |
Dementia in human immunodeficiency virus (HIV) disease | N/A | UCOD of B20 and ACOD of F03 (Unspecified dementia) |
Dementia due to effect of substances | F10.7, F13.7, F18.7 | F10.7, F13.7, F18.7 |
Unspecified dementia | F03 and no other dementias as ACODs: G30.0, G30.1, G30.8, G30.9, G31.0, G31.8, F00, F01, F10.7, F13.7, F18.7, F05.1 | F03 and no UCOD of: A81.0, G10, G20, B20 and no other dementias as a UCOD: G30.0, G30.1, G30.8, G30.9, G31.0, G31.8, F01, F10.7, F13.7, F18.7 and no other dementias as ACODs: G30.0, G30.1, G30.8, G30.9, G31.0, G31.8, F00, F01, F10.7, F13.7, F18.7, F05.1 |
Delirium superimposed on dementia | N/A | F05.1 |
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 occurred, 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 are counted according to year of death occurrence. Deaths registered in 2019 and earlier are based on the final version of cause of death data; deaths registered in 2020 are based on the revised version; and deaths registered in 2021 and 2022 are based on the preliminary version. Revised and preliminary versions are subject to further revision by the ABS; deaths related to dementia in 2020, 2021 and 2022 are likely an undercount as a result of missing late registration.
Analyses of deaths among First Nations people are based on whether people identified as being First Nations people (Aboriginal and/or Torres Strait Islanders) or not (non-Indigenous), and exclude deaths where the Indigenous status was unknown. In line with national reporting guidelines, data for Victoria, Tasmania, and the Australian Capital Territory have been excluded for all analyses involving First Nations people, with the exception of analysis by remoteness areas, which includes all states and territories.
Due to the onset of dementia occurring mostly 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 people population.
Leading underlying causes of deaths overall, and leading causes of death presented where dementia was an associated cause of death, are classified using an AIHW-modified version of Becker et al. (2006). This is based on recommendations of the World Health Organization (WHO) (Becker et al. 2006) with minor modifications to suit the Australian context.
Geography is based on area of usual residence – Statistical Local Area Level 2 (SA2). Unknown/missing includes deaths where place of usual residence was overseas, no fixed abode, offshore and migratory, and undefined.
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 study 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). Further, coding changes and variations in 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.
Childhood dementia deaths
In the September 2024 Dementia in Australia update, childhood dementia deaths have been reported for the first time. 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.
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 30 June 2022 and 1 July 2023, 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 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 9 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).
ATC code | Description |
---|---|
A | Alimentary tract and metabolism |
A02 | Drugs for acid related disorders |
A06 | Drugs for constipation |
B | Blood and blood forming organs |
B01 | Antithrombotic agents |
C | Cardiovascular system |
C07 | Beta blocking agents |
C09 | Agents acting on the renin-angiotensin system |
C10 | Lipid modifying agents |
D | Dermatologicals |
G | Genito-urinary system and sex hormones |
H | Systemic hormonal preparations, excluding sex hormones and insulins |
J | Anti-infectives for systemic use |
J01 | Antibacterials for systemic use |
L | Antineoplastic and immunomodulating agents |
M | Musculo-skeletal system |
N | Nervous system |
N02 | Analgesics |
N05 | Psycholeptics |
N06 | Psychoanaleptics |
P | Antiparasitic products, insecticides and repellents |
R | Respiratory system |
S | Sensory organs |
Various |
Calculations of Defined Daily Doses (DDDs)
DDDs were calculated as follows for each dementia-specific medication:
Number of DDDs = (Number of units x Amount of specified drug per item/ DDD amount for the specified dementia-specific drug)
- 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 survey, conducted in 2018. Previous surveys were conducted in the years 1981, 1988, 1993, 1998, 2003, 2009, 2012 and 2015.
Survey collection
The 2018, 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, home units, townhouses), as well as self-care components of retirement villages.
- Cared accommodation component – people living in residential aged care facilities, 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 65,805 people included in the 2018 SDAC – 54,142 people from the household component and 11,663 people living in cared accommodation.
The household component of the survey was interviewer-administered, and involved collecting information from all people residing in the household who were part of the key populations listed above, as well as residents who provided informal care and assistance with the self-care, mobility and communication (core-activities) for a co-resident, and were considered to provide a greater level of care than others for that care recipient (considered the primary carer). 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). In this report, people with dementia who were included in the household component are referred to as ‘living in the community’.
The cared accommodation component was administered via paper forms mailed directly to selected establishments. As such, the information collected was based on staff members’ knowledge of the residents and from clinical and administrative records.
Further information on the 2018 SDAC method of collection can be found at: Disability, Ageing and Carers, Australia: Summary of Findings methodology, 2018.
Reporting of dementia
In this report, a person was considered to have dementia in the SDAC 2018 if, the following conditions were reported as a health condition (main condition or otherwise):
- Dementia – SDAC diagnosis code 0511.
- Alzheimer’s disease – SDAC diagnosis code 0605.
- Dementia with Lewy bodies – SDAC diagnosis code 0615.
- Frontotemporal dementia – SDAC diagnosis code 0616.
It is possible that some people with certain types of dementia (such as dementia in Huntington’s disease) may have only had the causal condition coded and would not be identified as having dementia. Reporting of dementia by type from the SDAC was considered unsuitable, due to the self-reporting nature of the household component of the survey and the low numbers observed for some of the dementia types.
As the SDAC does not perform clinical assessment of survey respondents, it is acknowledged the SDAC will under-estimate 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.
Health condition coding in the SDAC is based on the International Classification of Diseases and Health Conditions, 10th Revision (ICD-10). A full list of long term health conditions and equivalent ICD-10 codes used in the SDAC is found at: Disability, Ageing and Carers, Australia: Summary of Findings methodology, 2018.
Limitations and level of disability
The SDAC captures information on peoples’ limitations and levels of disability. Limitations were assessed in terms of what a persons’ level of difficulty was in undertaking each of a number of tasks, their need for assistance in each task and whether aids or equipment were used (Table 10). These tasks were grouped into either core-activities (self-care, mobility or communication related tasks) or other activities.
Activity | Tasks |
---|---|
Core activities | |
Communication | Understanding family or friends |
Being understood by family or friends | |
Understanding strangers | |
Being understood by strangers | |
Mobility | Getting into or out of a bed or chair |
Moving about usual place of residence | |
Moving about a place away from usual residence | |
Walking 200 metres | |
Walking up and down stairs without a handrail | |
Bending and picking up an object from the floor | |
Using public transport | |
Self-care | Showering or bathing |
Dressing | |
Eating | |
Toileting | |
Bladder or bowel control | |
Other activities | |
Health care | Foot care |
Taking medications or administering injections | |
Dressing wounds | |
Using medical equipment | |
Manipulating muscles or limbs | |
Reading or writing | Checking bills or bank statements |
Writing letters | |
Filling in forms | |
Private transport | Going to places away from the usual place of residence |
Household chores | Laundry |
Vacuuming | |
Dusting | |
Property maintenance | Changing light bulbs, taps or washers |
Making minor home repairs | |
Mowing lawns, watering, pruning shrubs, light weeding or planting | |
Removing rubbish | |
Meal preparation | Preparing ingredients |
Cooking food | |
Cognition or emotion | Making friendships, maintaining relationships, or interacting with others |
Coping with feelings or emotions | |
Decision making or thinking through problems | |
Managing own behaviour |
Source: Australian Bureau of Statistics, Disability, Ageing and Carers, Australia: Summary of Findings methodology 2018
Level of disability
The level of disability (or limitation) is based on the degree of assistance or supervision required by the survey respondent in one or all core activities. The level of disability is grouped into 4 categories:
- Mild limitations: the person needs no help and has no difficulty with any of the core activity tasks, but uses aids or equipment for core tasks, or has other limitations (such as difficulty walking short distances, unable to easily bend over or needs help with using public transport).
- Moderate limitations: the person needs no help, but has difficulty with a core activity task.
- Severe limitations: the person sometimes needs help with a core activity task, and/or has difficulty understanding or being understood by family or friends, or can communicate more easily using non-spoken forms of communication.
- 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. SDAC only collects information on primary carers who live in the same household as their care recipient.
Primary carers excludes people who provide formal assistance (on a regular paid basis, usually associated with an organisation).
The SDAC does not capture information about people who provide informal care to those with dementia living in residential aged care facilities.
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, with the exception of:
- people in Australian external territories
- foreign diplomats and their families
- foreign crew members on ships who remain on the ship and do not undertake migration formalities
- 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.