Data sources measuring the impact of dementia

Dementia can impact individuals, friends and family and health and aged care systems in different ways. Dementia can lead to varying levels of impairment and impact social engagement and access to the community. Access to formal and informal supports and the level of community awareness and stigma will influence the impact of dementia on persons with dementia and their carers.

The health impact of dementia at the national level can be measured objectively by burden of disease analysis and mortality, and the financial impact to the government by disease expenditure analyses. These analyses also provide population-level comparisons across different conditions and over time.

Burden of disease

Burden of disease analysis is valuable for monitoring population health as it measures the combined impact of living with and dying prematurely from disease and injury, allowing comparison between diseases and population groups. The contribution of various risk and protective factors can also be measured.

Burden of disease analysis provides a valuable evidence base for health policy formulation and health service planning. It can highlight which diseases and risk factors cause the most burden, which are increasing or decreasing, and which are causing the greatest health inequalities and gaps. It can indicate the diseases most likely to impact the health system and services and estimate the burden attributable to specific risk and protective factors to target prevention policies.

Disease expenditure

Disease expenditure for dementia includes spending on health and aged care goods and services. It includes spending by governments as well as individuals and other non-government funders, such as private health insurers. Providing goods and services for people with dementia and their carers uses extensive resources in terms of health professionals, hospital services, out-of-hospital services, medications, community support programs, aged care assessments and a range of aged care services. The disease expenditure estimates do not include indirect costs such as loss of productivity or income because of disease.

In addition to disease expenditure data, aged care expenditure estimates are based on government administrative data. Monitoring expenditure for dementia is critical for policy development and service planning as it provides important information on the cost of caring for people with dementia across the health and aged care sectors. It also provides insights into patterns of service use and can be used to evaluate the cost-effectiveness of dementia-related health and aged care policies and interventions.


Death estimates are a vital measure of a population’s health and inform patterns of diseases that cause death, by population groups and over time. Monitoring the deaths of people with dementia can guide policy development and service planning as it can help explain differences and changes in health status and evaluate population health strategies. The number of people dying with dementia is increasing over time along with increases in population and population ageing. The coding of dementia on death certificates has changed over time and there are differences between state and territory jurisdictions in the recording of causes or contributing factors of death. Dementia is usually a contributing factor when listed as a cause of death. This is unlike other conditions such as cardiovascular diseases (for example, stroke or heart attack) where a single event is responsible. However, it is not unlike cancer where other systems are impacted, leading to other primary causes of death, with dementia being an underlying or contributing cause.