Technical notes

In order to provide a more complete picture of dementia in Australia, data presented in this report are sourced from a range of data collections from several organisations, including:

  • Australian Institute of Health and Welfare (AIHW)
  • Australian Bureau of Statistics (ABS)
  • Australian Government Department of Health and Aged Care
  • Dementia Australia
  • Dementia Support Australia.

The latest data have been used wherever possible. Data are subject to change due to: the nature and timing of the data collection; a regular program of updates and maintenance; and newly discovered errors or anomalies. Revisions and changes in coverage should be considered when interpreting changes over time.

A summary of the main data sources used in this report are included in Table 1 below. See Data sources for more detailed information on each of the data sources.

See Methods for information on the methodologies used to derive estimates (for example, dementia prevalence or health and aged care expenditure) and other statistics presented in this report. It is important to note that differences between data collections and methodological approaches may influence the comparability of estimates across data sources within this report, as well as with other published information not estimated by AIHW. Where relevant these considerations have been noted within the report.

In this report numbers were rounded using two different methods. For chapters updated in February 2023 and onwards numbers between 100,000 and 999,999 were rounded to the nearest 1,000. Numbers less than 100,000 follow the below rounding structure.

For chapters updated prior to February and numbers, numbers between 1,000 and 999,999 are rounded to the nearest hundred and numbers over and including 1 million are rounded to the nearest 100,000. Numbers less than 1,000 are not rounded. Percentages and rates are generally rounded to whole numbers, except for numbers less than 10% which are rounded to 1 decimal point. Refer to the Supplementary data tables of this report for unrounded numbers.   

See Glossary for the definition of technical concepts used throughout this report.

Table 1: Summary of the main data sources used in Dementia in Australia
Source Data Source Main source year Frequency of updates Description Section/s where data was used
Australian Institute of Welfare Australian Burden of Disease Study

2022 (national estimates)

2018 (small area and Indigenous Australian estimates)

 Ad hoc Data on the fatal, non-fatal and total burden of disease in Australia.

Burden of disease due to dementia

Burden of disease due to dementia among Indigenous Australians
  Disease Expenditure Database 2018–19 Ad hoc Data on government expenditure on disease estimated using multiple data sources. Health and aged care expenditure on dementia
  National Aged Care Data Clearinghouse Various Various A central repository of national aged care data from various sources, mostly related to government-subsidised aged care programs operating under the Aged Care Act 1997. In this report data on the National Screening and Assessment Form and the Aged Care Funding Instrument are presented.

Aged care and support services used by people with dementia

Behaviours and psychological symptoms of dementia

Dementia among people from culturally and linguistically diverse backgrounds
  National Hospital Morbidity Database 2020–21 Annual Episode-level records from admitted patient morbidity data collection systems in Australian hospitals (public and private). The data set for the reference period 2020–21 includes records for admitted patient separations between 1 July 2020 and 30 June 2021.

Hospital care

Hospital care for Indigenous Australians with dementia
  National Integrated Health Services Information Analysis Asset (NIHSI) 2016–17 Version 0.5 produced in 2020

NIHSI version 0.5 contains linked data from 2010–11 to 2016–17 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
  • Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme national data
  • Medicare Benefits Schedule national data
  • Residential aged care data from National Aged Care Clearinghouse(person level assessments, episodes in care, and leave from care and information on facilities) national data
  • National Mortality Database data.
 Health services used by people with dementia
  National Mortality Database 2020 Annual Data on records for deaths in Australia from 1964.

Deaths due to dementia

Population health impacts of dementia among Indigenous Australians
  Pharmaceutical Benefits Scheme/ Repatriation Pharmaceutical Benefits Scheme 2019–20 Daily Data on medications prescribed and prescriptions dispensed under the Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme. Prescriptions for dementia-specific medications
Australian Bureau of Statistics Estimated Resident Population Various Yearly ABS estimates of the usual resident population of Australia. Prevalence of dementia
  Multi-Agency Data Integration Partnership data asset Various Ad hoc Linked national survey and administrative data from a range of Commonwealth agencies, including healthcare, Census, social security payments, personal income tax, and mortality to create a comprehensive picture of Australia over time. Cultural and linguistic diversity among Australians who died with dementia
  Survey of Disability Ageing and Carers 2018 Every 3-4 years Detailed information on a sample of people who either; have a disability that restricts every-day activities, are aged 65 or over or are people who care for individuals with a disability, long-term health condition(s) (including dementia) or older people.

Carers and care needs of people with dementia

Aged care assessments

Dementia among people from culturally and linguistically diverse backgrounds
Dementia Australia National Dementia Helpline administrative data 2020–21 Ad hoc Data on contacts to the National Dementia Helpline. Further information on these data is not available. National Dementia Support Program and Dementia Friendly Communities
Dementia Support Australia Dementia Behaviour Management Advisory Service and Severe Behaviour Response Teams administrative data 2022 Ad hoc Data on cases supported by the Dementia Behaviour Management Advisory Service and Severe Behaviour Response Teams.

Dementia Support Australia

Behaviours and psychological symptoms of dementia