Survey data that accurately reflect the characteristics of Australia’s population are an essential source of data for monitoring the health of a population. Surveys can complement other data sources by capturing people who may not appear in other data collections (for example, those that do not have contact with the health or aged care system). Unlike administrative data that are captured for non-statistical purposes such as administration, operations and service delivery, surveys are designed to collect data for specific research, policy and planning purposes.
The Australian Bureau of Statistics’ Survey of Disability, Ageing and Carers (SDAC) is pivotal for understanding dementia, particularly among people living in the community. The SDAC provides detailed information on the characteristics, health and functional status, experiences of disability and care needs for people aged 65 or over and/or with disability. The SDAC captures data on people living with dementia but as the SDAC does not perform clinical assessment of survey respondents, the survey will underestimate people in the early stages of dementia. Further, some respondents may choose not to disclose their dementia. The SDAC also collects important information on carers of people with dementia, providing rich data on the types of care they provide, the impact of the caring role on a carers’ wellbeing, health, finances and employment, as well as information on unmet needs that carers face.
The National Health Survey and other surveys that collect risk factor data for preventable conditions can inform trends regarding the likelihood of dementia increasing, decreasing or staying the same, and assess if health promotion programs (targeting risk factors) are working in the community. While the National Health Survey collects information on health conditions, it does not adequately capture data on people living with dementia.
A question on the presence of chronic disease, including dementia, was included in the 2021 Census, and will be analysed to assess if this can assist to improve the estimate of the prevalence of dementia in Australia.
The use of other survey data for national monitoring of dementia is often challenging. For example, surveys that are not specifically designed for dementia monitoring may not record dementia or if they do, the number of respondents may be too small to report. Other surveys may capture dementia adequately and over time, but do not have national coverage. The cognitive decline that accompanies dementia is expected to limit the self-reporting of dementia, and not all persons with dementia have support to help report their medical conditions, which makes under-reporting more likely.
National administrative and survey data often lack information to monitor dementia among vulnerable groups or groups at higher risk of developing dementia, so smaller-scale Australian research studies also play an important role in providing insights on these groups while the national data landscape improves.