10: Other care and support services used by people with dementia and their carers
There are 3 main activities proposed to improve data on care and support services for people with dementia and their carers. These include activities to:
- 10a: Explore patterns of service use, transitions of care and access to services relative to need for people living with dementia, using linked data
- 10b: Develop data on elder abuse experienced by people living with dementia for improved monitoring and reporting
- 10c: Develop data to better understand advance care planning and palliative care for people living with dementia
Other activities in this plan may also contribute to improving data on care and support services for people with dementia and their carers included:
- 2c: Collect data on the experiences of people with dementia and their carers (described in Dementia awareness and stigma)
- 2d: Collect data on experiences of people with dementia and their carers among priority groups (described in Dementia awareness and stigma)
- 3a: Incorporate dementia data in enduring linked data assets to meet the needs of dementia monitoring (described in Dementia prevalence and incidence)
Each activity provides information on the intended outcome, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.
Activity 10a: Explore patterns of service use, transitions of care and access of services relative to need for people living with dementia, using linked data
There is potential to use existing enduring linked data sets to gain greater insights on the use of other care and support services for people living with dementia and their carers. For example, the National Health Data Hub (NHDH) data set currently allows analysis of pathways in and out of respite residential aged care for people with dementia. Depending on the data available, broader patterns on service use, transitions of care and access to these services relative to need can be explored.
The activity would involve multiple projects and better data would become available with improvements in data available in national enduring data linkages.
| Outcome | Better data on the use of carer and support services for people living with dementia |
|---|---|
| Level of investment | Low |
| Timeframe | Short |
| Responsible stakeholder | AIHW NCMD |
| Progress | The NCMD has completed and published:
National Disability Insurance Scheme (NDIS) data was added to the AIHW National Health Data Hub (NHDH) in late 2024 and is now also included in the Person Level Integrated Data Asset (PLIDA). While NDIS data has been used in reporting of childhood dementia in Dementia in Australia, its linkage with other data sets may offer deeper insights into both childhood and younger onset dementia. These linkages could inform future work, including updates to the 2022 report, Younger onset dementia: new insights using linked data, and support cohort identification for routine dementia monitoring and other linked data research. In addition to NHDH work, the NCMD has contracted the Agency for Clinical Innovation (ACI), within NSW Health, to analyse Lumos data and report on dementia care and management in primary health care settings. This project has commenced and will be completed in late 2026. |
Activity 10b: Develop data on elder abuse experienced by people living with dementia for improved monitoring and reporting
People in Australia are at an increased risk of abuse in later years (AIHW 2025a). Factors associated with dementia and mild cognitive impairment can add to this risk, such as functional or care dependency and psychological difficulties (AIFS 2019). Collecting data on people living with dementia or mild cognitive impairment experiencing elder abuse can be challenging as community-based surveys often exclude respondents with cognitive difficulties, and information on abuse incidents in a residential aged care setting are not currently reported on an individual level with health condition information. To align with priorities under the National Dementia Action Plan, this activity involves a collaboration between relevant governmental agencies and service providers to develop an appropriate source of elder abuse data for people living with dementia, to improve monitoring and reporting on this subject. This activity would aim to align with broader work occurring in this space, such as the forthcoming National Plan to End the Abuse and Mistreatment of Older People, which updates the previous plan.
| Outcome | Improved data and understanding on elder abuse experienced by people living with dementia; contributes to NDAP actions 1 and 2. |
|---|---|
| Level of investment | Medium |
| Timeframe | Long |
| Responsible stakeholder | AIHW and broader government, advocacy groups. |
| Progress | Not started |
Activity 10c: Develop data to better understand advance care planning and palliative care for people living with dementia
People in the later stages of dementia require significant care and support to maintain quality of life and have their wishes met. Access to adequate advance care planning and palliative care services are two important ways to support people living with dementia and their families in the later stages of the condition.
There are currently no national data reported on advance care planning or palliative care among people with dementia.
This activity should explore existing linkages and new data sources to understand how advance care planning and palliative care are used by people living with dementia.
| Outcome | Improved data and understanding of advance care planning and palliative care for people living with dementia; data for indicators for NDAP action 5: Improve treatment, coordination of care and support |
|---|---|
| Level of investment | Medium |
| Timeframe | Medium |
| Responsible stakeholder | NCMD; external providers |
| Progress | The NCMD are exploring data sources for reporting against indicators of advance care planning and palliative care for NDAP action 5. Further work is needed to explore data linkages for nationally representative information. |
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 (Department of Social Services 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 2025b). However, there are significant data gaps, particularly information on when palliative care has been provided and who provided it, especially outside specialised palliative 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 vision for palliative care reporting over the next decade (AIHW 2025b).
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.
Addressing the data gap and improving data
This list of data improvement activities may be revised stemming from concurrent data development work, for example:
- The AIHW Palliative Care Work Programme (funded by the Department of Health, Disability and Ageing) 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.
- Australia’s Disability Strategy 2021–2031 which aims to improve data and reporting on people with a disability. Linking NDIS data across systems will provide insights of service use for 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.
AIFS (Australian Institute of Family Studies) (2019) Elder abuse: key issues and emerging evidence, AIFS, Australian Government, accessed 23 August 2024.
AIHW (2025a) Family, domestic and sexual violence: Older People, AIHW, Australian Government, accessed 12 September 2025.
AIHW (2025b) Palliative care services in Australia, AIHW, Australian Government, accessed 3 September 2025.
Alzheimer’s Australia (2015) Quality dementia care: younger onset dementia – A practical guide, Alzheimer’s Australia, accessed 1 June 2023.
Department of Social Services (2023) Emotional and practical services for carers, Carer Gateway website, accessed 1 March 2023.