National Dementia Data Improvement Plan 2023–2033

Administrative data collected by governments or providers as part of their administration of programs provide valuable information on the characteristics of people with dementia and, if dementia is captured, their use of formal services. People with dementia tend to have increasing health and personal care needs as their condition progresses. The use of formal services by a person with dementia depends on many factors including the number and nature of the person’s health conditions, the activities in which assistance is required, the availability of social resources such as informal carers, personal preferences, cultural influences, financial resources, and the accessibility of services. Post-diagnostic support services are also important to help manage dementia.

Health services treat and manage dementia while aged care services provide support and personal care for daily living and manage dementia according to clinical direction within residential respite and residential aged care. Other supports services are also available to people with dementia (for example, disability support services through the National Disability Insurance Scheme). National data on health, aged care and other support services data are largely administrative data.

Administrative data with national coverage

Most administrative data are routinely collected and has national widespread coverage, providing rich information about people with dementia on a range of topics. For example:

• hospital admissions are captured in the National Hospital Morbidity Database (NHMD)
• medications dispensed are collected under the Pharmaceuticals Benefit Scheme (PBS) and Repatriation Pharmaceuticals Benefit Scheme (RPBS)
• aged care assessments and residential aged care services from the National Aged Care Data Clearinghouse (NACDC) [Note, this is an incomplete coverage of data on aged care services provided to people with dementia. Gaps exist in the use of home-based services (such as Home Care Packages), and services provided for priority population groups (for example, services under the National Aboriginal and Torres Strait Islander Flexible Aged Care Program as the Multi-Purpose Services (MPS) Program designed for small regional and remote communities).
• income and disability support and allowances such as that captured under the National Disability Insurance Scheme (NDIS) and Services Australia payment data.

Monitoring the use of health, aged care and other support services and interactions between these services by people with dementia and their carers is essential for service planning. Monitoring can show the use of health and aged care services, patterns of service use and, where linked data are available, links between these services. Linked service and outcome data may also identify opportunities to improve outcomes for people with dementia and their carers.

Limitations of administrative data

However, there are limitations to the use of administrative data for monitoring dementia including under-diagnosis and under-disclosure of dementia, and inconsistent coding of dementia. Aged care reforms have also led to changes in the collection of data on health conditions in aged care data over time. See Appendix for more detail.

Administrative data sets are largely designed for funding and administration purposes, and accurate recording of dementia and other health conditions is not always a priority. One study of New South Wales public hospitals found that 47% of people with dementia who were admitted to hospital in 2006–07 did not have dementia recorded in their hospital admission (AIHW 2013). Another study found that among women who had died and had a record of dementia in other sources, only 52% had dementia listed as a contributing cause of death and 25% had dementia reported as the main cause of death (Xu et al. 2022).

Dementia may be under-reported and/or inconsistently recorded across administrative data collections for reasons such as:

• changes in clinical guidelines for recording and managing dementia
• variable awareness of dementia among health professionals
• decisions made by health professionals and clinical coders when recording dementia
• past changes to the International Classification of Diseases (ICD-10) instructions for coding deaths data (AIHW 2020).

Income support administrative data

People with dementia and informal carers of people with dementia may be eligible for income support. People with dementia may receive the Age Pension or Disability Support Pension as their main income support. People who provide constant care for a person with a disability or severe medical condition such as dementia may receive the Carer Payment as their main income support. Carer Allowance and Carer Supplement are income-tested supplementary payments for people providing daily care and may be provided to those in or out of the paid workforce. Income support payments offer insights into people’s changing circumstances over time: their capacity to work, levels of disability, and caring responsibilities. These payments, while not specific to dementia, offer the potential to link to a dementia diagnosis in other data sets to better estimate the national cost of dementia.