National Dementia Data Improvement Plan 2023–2033

People with dementia and their carers may access a range of services in addition to health and aged care, such as dementia-specific support services, disability support services, respite care and palliative care. Understanding the types and quality of care services provided is important for monitoring post-diagnosis support for people recently diagnosed, patient experiences with the health system (including access and barriers), and how variations in care impact health outcomes. Monitoring the patterns of service use by people with dementia and their carers can indicate demand and is essential for service planning. It can also help assess whether services are meeting needs and identify opportunities to improve outcomes for people with dementia and their carers.

Carers can access information, resources and support services through the Carer Gateway and Dementia Australia (Australian Government 2023). Services can include counselling, networking forums, coaching, skills courses, links to financial support and respite services. The use of respite services by people with dementia is an example of a care type where there is currently a lack of national data in a useable format. The Australian Government subsidises community-based and residential respite care to provide a person and their carer with a break from their usual care arrangements. Carers can also access emergency respite through the Carer Gateway and there may be future opportunities to use these data to improve monitoring on the use of respite care by people with dementia and their carers.

National palliative care-related services are published biannually in the Palliative Care Services in Australia report (AIHW 2023). However, there are significant data gaps, particularly information on when palliative care has been provided and who provided it, especially in community, primary care and residential aged care settings. Improving data on priority populations, such as those with cognitive impairment (including dementia) was identified as a key priority in the National Palliative Care Information Priorities Report, which is an aspirational vison for palliative care reporting over the next decade (AIHW 2023).

The needs and care requirements of people with younger onset dementia and childhood dementia, are different from those of older people. Younger onset dementia may occur at an age when the demands of family and work are at a peak, placing a severe strain on family and carer dynamics and finances (Alzheimer’s Australia 2015). There are limited national statistics on people with younger onset dementia and their carers, and children with childhood dementia who may be supported by the National Disability Insurance Scheme (NDIS). Examining this source, in conjunction with other health service use data will provide opportunities for improving data on people with younger onset dementia, as well as on childhood dementia.

Proposed data improvement activity

There are 4 main activities proposed to improve data on care and support services for people with dementia and their carers. These include activities to:

• explore patterns of service use, transitions of care and access of services relative to need for people living with dementia using linked data
• incorporate dementia data in enduring linked data assets to meet the needs of dementia monitoring (Activity 3a detailed under Dementia prevalence and incidence)
• collect data on the experiences of people with dementia and their carers (Activity 2c detailed under Dementia awareness and stigma)
• collect data on experiences of people with dementia and their carers among priority groups (Activity 2d detailed under Dementia awareness and stigma).

Each activity provides information on the intended outcome, priority rating, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.

This list of data improvement activities may be revised stemming from concurrent data development work, for example:

• The AIHW Palliative Care Workplan (funded by the Department of Health and Aged Care) aims to build comprehensive, accurate and publicly available data that will improve our understanding on the needs of people requiring palliative care to inform improvements in the palliative care system and implementation of the Palliative Care Strategy.
• The new National Disability Data Asset being established will bring together data from different government agencies about Australians with disability and without disability. This asset may provide greater insights on the use of NDIS services provided to people with younger onset dementia and childhood dementia, as well as people with dementia who have other disability.

There is an opportunity to leverage the above work to improve national reporting on people living with dementia and data across settings and services. This plan will be updated in the future to incorporate new activities stemming from these initiatives.