Disability, Ageing and Carers, Australia: Summary of Findings methodology

The 2022 Survey of Disability, Ageing and Carers (SDAC) is the tenth national survey, following similar surveys in 1981, 1988, 1993, 1998, 2003, 2009, 2012,  2015 and 2018.

The 2022 SDAC was conducted from June 2022 to February 2023. Data was collected from approximately 13,700 households around Australia and 1,100 establishments that provide cared-accommodation.

The main aims of the SDAC are to provide information on:

• people with disability,
• people aged 65 and over, and
• primary carers of people with disability.

Key topics included:

• long-term health conditions
• need for and receipt of assistance for persons with disability or aged 65 years and over
• the use of aids to help manage a person's disability
• experiences of violence, abuse and neglect of people with disability or aged 65 years and over
• accessibility issues and discrimination experienced by people with disability
• primary carers' need for and access to support in their caring role
• for primary carers, the impact of their caring role on their health, wellbeing and employment
• access to health services and satisfaction with level of social participation for all target populations
• demographic and socio-economic characteristics of all people in the survey.

Most data in the 2022 SDAC is considered to be comparable with previous Surveys of Disability, Ageing and Carers. However, comparisons should be made with caution.

Respondents to the SDAC household component had the option of completing the questions via online questionnaire without the presence of an ABS interviewer. This was made available to SDAC respondents for the first time in 2022 and 41.0% of respondents completed the survey this way. To enable this, extra information was provided on screen to help respondents understand the questions. These respondents were not able to ask clarifying questions of an ABS interviewer as they would have been able to do in previous SDAC collections. The same on-screen information was provided to ABS interviewers for households completing the survey by personal interview with an interviewer.

While there was little change to the questions used to screen household members for disability the question sequencing and method for confirming disability during an individual's personal interview has changed. The disability status definition and disability types used to identify disability have not changed.

There has been some change to questions that identify carers during household screening with the intent of maximising primary carer identification early in the interview to improve respondent experience for primary carers completing personal interviews.  Questions that confirm primary carer status during the personal interview also have sequencing and structural changes. The primary carer definition has not changed.  

Some questions have been removed or condensed with other questions to improve respondent experience in other parts of the survey. For example, some questions have been updated to reflect improvements in technology, particularly within the Aids Used and Needed topics and the Internet Use topic. The identification of long-term health conditions has been updated to be more consistent with other ABS surveys and to better match the WHO International Classification of Diseases,10th revision (ICD-10). Refer to the Summary of content changes for more details.

The cared-accommodation component also moved to an online questionnaire format for the first time for the 2022 SDAC. Previously responses were provided via paper form. The questions for the cared-accommodation component were updated to match the changes to the household component.

The 2022 SDAC Data Item List provides more information about comparability of specific data items.

The scope of the survey included:

• all usual residents in Australia aged 0 years and over living in private dwellings, self-care retirement villages, or health establishments that provide long-term cared accommodation (for at least three months)
• both urban and rural areas in all states and territories, except for very remote parts of Australia and discrete Aboriginal and Torres Strait Islander communities.

The following people were excluded:

• visitors to private dwellings and self-care retirement villages
• non-Australian diplomats, diplomatic staff and members of their households
• members of non-Australian defence forces (and their dependents) stationed in Australia
• overseas visitors who have not been living in Australia for 12 months or more, or do not intend to do so
• people who usually live in hotels, motels, short-stay caravan parks, religious or educational institutions, hostels for the homeless or night shelters, gaols or correctional institutions, staff quarters, guest houses or boarding houses
• people in very remote areas
• discrete Aboriginal and Torres Strait Islander communities
• people living in households where all usual residents are less than 15 years of age. 

The ABS has two different ways of collecting information depending on whether people live in: 

• private dwellings such as houses, flats, apartments, townhouses and self-care components of retirement villages (the household component); or 
• hospitals, nursing homes, hostels and other cared-accommodation for a period of three months or more (the cared-accommodation component).

In the 2022 SDAC disability group homes with less than six residents were included in the cared-accommodation component. This is a change from the 2018 SDAC where they were included in the household component.

For the household component, households, including those within self-care retirement villages, were randomly selected to participate in the survey.

For the cared-accommodation component all known health establishments in Australia that may provide long-term cared-accommodation were asked via online form:

• whether their establishment offered long-term cared-accommodation for three months or more
• the current number of occupants
• the type of establishment.

Health establishments providing cared-accommodation for at least three months could then be selected in the sample. The more long-term occupants an establishment had, the higher their chance of being selected. If selected, a contact person from the health establishment was asked to choose a random sample of occupants by following instructions the ABS provided.

Household component

There were 13,742 fully responding households in the household component, a response rate of 71.8%. 

Cared-accommodation component

There were 1,094 responding establishments in the cared-accommodation component, a response rate of 91.0%.

Collection of the household component occurred between 12 June 2022 and 25 February 2023. Information collected included:

• Demographic information about all usual residents of the household, as well as information about the dwelling, completed by any responsible adult in the household.
• Screening questions to determine if anyone in the household had disability or provided care to another person within or outside the household, completed by any responsible adult in the household. 
• Personal interview completed by each person in the household with disability, aged 65 years or more or who were identified as primary carers.
• Proxy interviews were conducted on behalf of these people when they were under 15 years of age, between 15 and 17 years of age where their parent or guardian did not agree to them being interviewed, or where people were unable to answer for themselves due to illness, disability, language problems or being unavailable for the interview.
• Information about language, visa status, education, employment, defence force service, personal income and smoking status of people aged under 65 without disability and who are not primary carers, completed by any responsible adult in the household.

The household component was collected using one of:

• completion of the whole survey via an online questionnaire, or
• completion of the whole survey face-to-face with an ABS interviewer, or
• commencement of the survey via an online questionnaire with follow-up completion face-to face with an ABS interviewer.

Two topics in the collection are considered sensitive and were collected in a way to protect the respondent's privacy. The collection was done either through self-completion of a paper form, or through the online form within a secure section of the questionnaire. The topics collected in this way were:

• primary carer attitudes to and experience of their caring role
• experiences of violence, abuse and neglect of persons aged 65 years and over or with disability aged 18 years and over.

In 2022, approximately 27% of the primary carer population did not complete the self-completion questionnaire. Analysis of 2022 data showed that there was not a statistically significant difference between the characteristics of primary carers who did respond to this topic when compared with primary carers who did not.

For the optional topic covering experiences of violence, abuse and neglect approximately 34% of people aged 65 years and over and people with disability aged 18 years and over did not complete the self-completion questionnaire. Males were less likely to respond to these questions than females. This difference is statistically significant. Differences in non-response characteristics can cause biased results and caution should be used in any analysis of relevant data items.

Collection of the cared-accommodation component occurred between 5 July 2022 and 6 September 2022 and involved completion of the survey via an online questionnaire. One or more staff members of the establishment completed the questions for each selected resident.

The range of information collected in the cared-accommodation questionnaire is narrower than in the household component as some topics were not suitable for a contact officer to answer on behalf of occupants or relevant to people in cared-accommodation.

Persons with disability were asked about: 

• what help they needed and received for mobility, self-care, communication, cognitive or emotional tasks, health care, household chores, property maintenance, meal preparation, reading and writing tasks, and transport activities 
• their use of aids and equipment  
• schooling restrictions, for those aged 5 to 20 years of age
• employment restrictions 
• how satisfied they were with the quality and range of services available 
• accessibility and discrimination related to disability
• their access to government support services including the National Disability Insurance Scheme (NDIS)
• their gender and sexual orientation
• their internet use 
• how they perceived their health and well-being
• their access and barriers to health care 
• their level of social and community participation 
• their experiences of violence, abuse and neglect.

Persons without disability aged 65 years and over were asked about: 

• their access to government support services
• their gender and sexual orientation
• how they perceived their health and well-being
• what help they needed and received for household chores, property maintenance, meal preparation, reading and writing tasks, and transport activities
• how satisfied they were with the quality and range of services available 
• their internet use 
• their level of social and community participation 
• their experiences of violence, abuse and neglect.

People who confirmed they were the primary carer of a person with disability were asked about:

• the type of care they provided
• the support available to them and their access to government support services
• their gender and sexual orientation
• their internet use
• how they perceived their health and well-being
• their access and barriers to health care
• their level of social and community participation
• how the caring role had affected their own health, well-being and workforce participation
• their attitudes to, and experience of, their caring role.

Information about a range of demographic and socio-economic characteristics including education, employment and income was collected from all persons including those not in the target populations to enable comparisons to be made between people in the target populations with the general population.

The 2022 SDAC uses the Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020. Data in this publication are presented using the sex at birth variable. When a small number of responses are recorded in any output category, outputs may be suppressed or combined into other categories due to confidentiality and statistical issues. A small number of people in the survey reported having a term other than male or female recorded as their sex at birth. Estimates for people whose sex at birth is neither male or female are not able to be output as a separate category but they are included in the estimates for total Persons.

See the Data Item List for full details of content collected in the 2022 SDAC.

Disability is a difficult concept to measure because it depends on a person's perception of their ability to perform a range of day-to-day activities. Wherever possible results were based on personal responses – people answering for themselves. However, in some cases information was provided by another person (a proxy), and these answers may have differed from how the selected person would have responded. The concepts of 'need' and 'difficulty' were more likely to be affected by proxy interviews.

People have different ways of assessing whether they have difficulty performing tasks. Some might compare themselves to others of a similar age, others might compare themselves to their own ability when younger.

The different collection methods used (personal interview for households, and administrator completed questionnaire for cared-accommodation) may have affected the reporting of need for assistance with core activities. This would impact the measure of disability status and would have a bigger impact on the older age groups because they are more likely to be in cared-accommodation.

A long-term health condition is defined as a medical condition (illness, injury or disability) which has lasted, or is expected to last for 6 months or more.

Conditions were classified based on the International Classification of Diseases: 10th Revision (ICD). The classification hierarchy was updated for the 2022 SDAC to improve use of the conditions data.

New COVID-19 codes have been included in the classification in line with the World Health Organisation's adaptation of the ICD.

See the Data Item List for full details of the conditions classification used in the 2022 SDAC.

A concordance between the current conditions classification and the previous version used in the 2018 SDAC is also available.

As only a sample of people were surveyed in the household component, results needed to be converted into estimates for the whole population. This is done with a process called weighting.

• Each person or household is given a number (known as a weight) to reflect how many people or households they represented in the whole population. 
• A person's or household’s initial weight is based on their probability of being selected in the sample. For example, if the probability of being selected was one in 45, then the person would have an initial weight of 45 (that is, they would represent 45 people).

The person and household level weights are then calibrated to align with independent estimates of the in-scope population, referred to as ‘benchmarks’. The benchmarks use additional information about the population to ensure that:

• people or households in the sample represent people or households that are similar to them
• the survey estimates reflect the distribution of the whole population, not the sample.

Benchmarks align to the estimated resident population (ERP) at September 2022 which was 10,029,883 households and 25,433,431 people (after exclusion of people living in non-private dwellings, very remote areas of Australia and discrete Aboriginal and Torres Strait Islander communities).

Sample counts and weighted estimates for the household component are presented in the table below.

The cared-accommodation component is benchmarked to the estimated number of people living in long-term cared-accommodation which was 190,866 people.

Sample counts and weighted estimates for the cared-accommodation component are presented in the table below.

Two types of error are possible in estimates based on a sample survey:

• non-sampling error
• sampling error.

This release presents national disability, ageing and carer estimates for 2022. Commentary presents analysis by selected population and economic characteristics.

Data cubes (spreadsheets) in this release present tables of estimates, proportions and their associated measures of error. A data item list and concordance between the 2022 SDAC conditions output classification and that of the 2018 SDAC is also available.

Detailed microdata is available on DataLab for users who want to undertake interactive (real time) complex analysis of microdata in the secure ABS environment.

The Census and Statistics Act 1905 authorises the ABS to collect statistical information, and requires that information is not published in a way that could identify a particular person or organisation. The ABS must make sure that information about individual respondents cannot be derived from published data.

To minimise the risk of identifying individuals in aggregate statistics, a technique called perturbation is used to randomly adjust cell values. Perturbation involves small random adjustment of the statistics which have a negligible impact on the underlying pattern. This is considered the most satisfactory technique for avoiding the release of identifiable data while maximising the range of information that can be released. After perturbation, a given published cell value will be consistent across all tables. However, adding up cell values in Data Cubes to derive a total may give a slightly different result to the published totals. The introduction of perturbation in publications ensures that these statistics are consistent with statistics released via services such as TableBuilder.

The following table summarises content changes applied in the 2022 SDAC. For full details of data items refer to the Data Item List.

The 2022 SDAC is considered to be comparable to the 2018 SDAC and previous cycles.

SDAC data for 2022 is structured into the following 10 levels:

The first four levels are in a hierarchical relationship: a person is a member of an income unit, which is a member of a family, which is a member of a household. Levels five to nine are in a hierarchical relationship with the person level and level ten is in a hierarchical relationship with level nine. All person and lower level records link to a household, family and income unit record. However, lower level records only exist where the person is in the relevant population. 

Note:

• Estimates have been rounded to the nearest one hundred persons 
• Due to rounding the sum of subtotals may not equal totals 
• Derived from Table 3.1 and Table 5.1

1. For more information on the terms used, refer to the Key definitions
2. Excludes people with disability who have both a core activity limitation and a schooling or employment restriction
3. 'Living in households’ comprises all private dwellings

Note:

• estimates have been rounded to the nearest one hundred persons 
• due to rounding the sum of subtotals may not equal totals 
• derived from Table 32.1

1. 'Living in households’ comprises all private dwellings 
2. In this survey, a person aged under 15 years cannot be a primary carer. For more information on primary carers, refer to Carers

In this survey, limitations relate to core activities while restrictions refer to schooling and employment. The limitations or restrictions are divided into activities and each activity is broken into tasks.

To identify whether a person has a particular type of limitation or restriction, the survey collects information on their:

• need for assistance
• difficulty experienced and
• use of aids or equipment 

to perform selected tasks. 

This table shows the tasks associated with each type of limitation and restriction.

Disabilities can be broadly grouped depending on whether they relate to functioning of the mind or the senses, or to anatomy or physiology. Disability groups may refer to a single disability or a number of broadly similar disabilities. The SDAC questions were designed to identify six separate groups based on the particular type of disability identified.

These groups are:

Sensory

• loss of sight (not corrected by glasses or contact lenses) 
• loss of hearing where communication is restricted or an aid is used 
• speech difficulties

Learning and understanding*

• difficulty learning or understanding things

Physical

• shortness of breath or breathing difficulties that restrict everyday activities 
• blackouts, seizures or loss of consciousness 
• chronic or recurrent pain or discomfort that restricts everyday activities 
• incomplete use of arms or fingers 
• difficulty gripping or holding things 
• incomplete use of feet or legs 
• restriction in physical activities or in doing physical work 
• disfigurement or deformity that restricts everyday activities

Psychosocial

• nervous or emotional condition that restricts everyday activities 
• mental illness or condition requiring help or supervision
• memory problems or periods of confusion that restrict everyday activities
• social or behavioural difficulties that restrict everyday activities

Head Injury, stroke or acquired brain injury

• head injury, stroke or other acquired brain injury with long-term effects that restrict everyday activities

Other

• receiving treatment or medication for any other long-term conditions or ailments and still restricted in everyday activities
• any other long-term conditions resulting in a restriction in everyday activities

The SDAC questionnaire has more detail on how disability types within groups are identified and is available on request.

*Learning and understanding was called Intellectual in earlier SDAC iterations. 

A carer is a person who provides any informal assistance (help or supervision) to people with disability or older people (aged 65 years and over). The assistance must be ongoing, or likely to be ongoing, for at least six months. 

Where the carer lives in the same household as the person they care for, the assistance is for one or more of the following activities:

Core activities: 

• Mobility 
• Self-care 
• Communication.

Non-core activities: 

• Health care 
• Cognitive or emotional tasks 
• Household chores 
• Property maintenance 
• Meal preparation 
• Reading or writing 
• Transport.

Carers do not have to live in the same household as the person they care for. Assistance to a person living in a different household to the carer relates to everyday activities. Specific information on the type of activity is only obtained where the carer is asked questions to confirm whether they are a primary carer. 

If a person provides formal assistance (on a regular paid basis, usually associated with an organisation) they are not considered to be carers in this survey. 

Informal assistance is unpaid, with the following exceptions: 

• small amounts of money, or payments for expenses incurred, can be paid to the carer by the person they care for
• if the carer is receiving a carer payment or other allowances, they are still regarded as providing informal care 

People who care for young children are only considered carers if their assistance is needed because of disability, not because of the child's age.

If there are multiple people caring for the same person, the survey distinguishes between primary, secondary and other carers. A person can be both a primary carer and an other carer or a secondary carer and an other carer. Due to the structure of the SDAC questionnaire it is not possible for a person to be identified as both a primary and a secondary carer. There is more information on types of carers below.

If a person cares for someone with a long term health condition only (who does not have a disability and is under 65) they are not considered to be a carer.

How carers are identified

The survey has a series of screening questions. A carer can be identified by:

• any responsible adult who answers broad questions about household members
• the person receiving care in their personal interview.

Primary carer

In this survey a primary carer is a person who: 

• is aged 15 years or over; and
• provides the most informal assistance to a person with one or more disabilities, with one or more of the core activities of mobility, self-care or communication, and
• the assistance is ongoing or likely to be ongoing for 6 months or more.

Primary carers and the people they care for may live in different households, but information about primary carers was only collected if they lived in households in the SDAC sample. 

Where carers and the people they care for lived in the same household the survey collected information from both. Occasionally carers and the person they cared for gave inconsistent responses. For example some carers considered themselves a primary carer but the person they cared for indicated that they did not require a primary carer as they did not have a core activity limitation. This inconsistency means that in a small number of cases, some primary carers will be reported as providing support to a person with non-core limitations only.

Secondary carer

A secondary carer is a person who:

• is aged 15 years and over; and
• provides at minimum 1 hour per week of informal assistance to a person with one or more disabilities, with one or more of the core activities of mobility, self-care or communication, but does not provide the most assistance, and
• the assistance is ongoing or likely to be ongoing for 6 months or more.

Secondary carer information was collected for the first time in the 2022 SDAC.

Other carer

An ‘other carer’ is a carer who meets any of these conditions. They:

• provide informal assistance with core or non-core activities but are aged under 15 years; or
• provide informal assistance with one or more of the core activity tasks but not the most assistance; or
• only assist with non-core activities.

Fall-back carer

A fall-back carer is someone the primary carer identifies as being able to take over their care responsibilities if the primary carer is unavailable. A fall-back carer cannot be a formal provider.

Possible primary carer

This term is used in situations where a primary carer has been identified by the household representative or person receiving care as someone who could be a primary carer but that person has not yet had the opportunity to confirm their primary carer status. 

Unconfirmed primary carer

This term is not used in the 2022 SDAC. It was used in the 2018 survey. An unconfirmed primary carer was a person:

• identified as a carer by any responsible adult or the person they cared for, and
• whose primary carer status could not be confirmed as they were unavailable for a personal interview.

Principal carer

This term has not been used since the 2003 survey. Previously, a principal carer was only identified by the person receiving care, as being the person who provided them with the most care, and not by the initially responding responsible adult. These carers were not asked to confirm their carer status. From 2009, personal interviews were conducted to confirm whether or not  they were a primary carer. 

Definitions of carers

This table shows the differences between primary, secondary and other types of carers.

The survey asked respondents about their two main formal providers of assistance for ten broad areas of activity:

Core activities

• Mobility
• Self-care
• Communication

Non-core activities

• Health care
• Cognitive or emotional tasks
• Household chores
• Property maintenance
• Meal preparation
• Reading or writing
• Transport

Respondents were provided with a pick list of assistance providers, which differed depending on the activity. Care providers were listed where it would be common for them to assist with that particular activity. The table below shows which formal providers were listed for each broad activity.

Where a respondent wanted to report an assistance provider that was not listed on the relevant pick list they could select 'Other organised service'. They were then taken to a coder where they could select from a wider range of assistance providers.

Respondents could nominate a maximum of two providers of care for each of the 10 broad areas of activity. If a person received assistance from three or more different formal providers, they were asked to pick the two main providers.

Age standardisation is a way of allowing comparisons between two or more populations with different age structures, in order to remove age as a factor when examining relationships between variables. For example, the age structure of the population of Australia is changing over time. As the prevalence of a particular health condition (for example, arthritis) or disability type (for example, difficulty gripping or holding things) may be related to age, any increase in the proportion of people with that health condition or disability type over time may be due to real increases in prevalence or to changes in the age structure of the population over time or both. Age standardising removes the effect of age in assessing change over time or between different populations.

Proportions quoted in commentary in this publication are not age standardised; however, proportions presented in Tables 1 and 2 include age standardised rates. Data are age standardised to the 2001 Australian population.