Measure 5.9: Improved advance care planning and palliative care for people living with dementia
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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 to report on advance care planning or palliative care among people with dementia. Some data that provide insights on this measure are available from:
- the Carer Wellbeing Survey
- the Palliative Care Outcomes Collaboration (PCOC).
However, the indicators shown below also have limitations and should be interpreted with caution:
- for advance care planning, data come from self-reported survey data from carers of people living with dementia, which could over-represent rates of having an advance care plan, as people living with dementia without a carer may not have as much support for care planning
- for palliative care, data come from information on people accessing specialised palliative care services participating in the PCOC.
Further data development is needed to more comprehensively track this measure.
Advance care plans
An advance care plan is a documented set of preferences about future health care. The early completion of an advance care plan is important for people living with dementia due to the unpredictable nature of cognitive decline (Bryant et al. 2022).
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Indicator
Proportion of carers of people living with dementia who reported that the person they care for has an advance care plan.
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Baseline value
46% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
The desired outcome is an increased proportion of carers who report that the person they care for has an advance care plan.
Change over time
Future updates of this report will track changes over time for this indicator.
Historical change over time: 2023 to 2024
The proportion of carers who reported that the person they care for has an advance care plan was stable, at 45% in 2023 and 46% in 2024. The difference was not statistically significant.
In 2024, the proportion of carers of people living with dementia who reported the person they care for has an advance care plan, did not differ significantly across population groups:
- 44% of women and 48% of men
- 43% of carers living in Major cities and 50% of carers living in regional or remote areas.
These data come from AIHW analysis of the Carer Wellbeing Survey (CWS).
The CWS is an annual national survey into the wellbeing of carers and their support services. In the most recent year available (2024), 9,166 carers were surveyed across Australia.
AIHW analysis of CWS data uses weighted percentages. Statistical significance (or non-significance) of differences in proportions between population groups or years for all comparisons of CWS data have been calculated based on a two-proportion z-test using weighted proportions.
While various demographic information is collected in the CWS, those with low counts and/or high relative standard errors are not presented in this report. Data for population groups are reported for this most recent year of data only and where data quality allows. This includes gender and remoteness area.
Remoteness area in the CWS uses the Australian Statistical Geography Standard (ASGS) Remoteness Structure. In this report ‘regional or remote’ incorporates the categories of Inner regional, Outer regional, Remote and Very remote.
While the CWS may under-represent carers who are not well connected with carer organisations and supports, it still provides important insights into the experiences of carers of people living with dementia.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.
Pain management during palliative care
Palliative care aims to prevent and relieve suffering and improve the quality of life of people facing problems associated with life-limiting illness.
Effective pain management is an important part of quality palliative care, but there is evidence that people living with dementia tend to experience poorer pain management than those without dementia (Achterberg et al. 2021; Eisenmann et al. 2020). Symptoms often change over the course of palliative care, so the following indicator looks at changes in pain during palliative care phases. Palliative care phases are clinically meaningful periods in a patient’s condition and fall into four categories: stable phase, unstable phase, deteriorating phase, and terminal phase (PCOC 2012).
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Indicator
Proportion of palliative care phases for people with dementia, for which distress related to pain improved or remained at a low level after intervention.
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Baseline value
84% of palliative care phases in 2024*
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Latest value
Baseline value only
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Progress
To be provided in future updates
*Note: ‘Low level’ refers to a Symptom Assessment Scale (SAS) score of 0-3.
The desired outcome is that physical pain among people with dementia is well-managed, meaning this indicator should increase over time.
Change over time
Future updates of this report will track changes over time for this indicator.
Historical change over time: 2022 to 2024
The proportion of palliative care phases for people with dementia, for which distress related to pain improved or remained at a low level after intervention was stable, at 84% in 2022, 83% in 2023 and 84% in 2024.
Carer wellbeing during palliative care
Quality palliative care not only supports the person with dementia during the later stages of the condition, but also provides support that promotes the wellbeing of a person’s family and carer.
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Indicator
Proportion of palliative care phases for people with dementia, for which family or carer problems improved or remained at a low level after intervention.
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Baseline value
80% of palliative care phases in 2024*
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Latest value
Baseline value only
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Progress
To be provided in future updates
*Note: Low level’ refers to a Palliative Care Problem Severity Score (PCPSS) score of 0-1.
The desired outcome is that palliative care services offered to people with dementia also support the wellbeing of a person’s family and carers, meaning this indicator should increase over time.
Change over time
Future updates of this report will track changes over time for this indicator.
Historical change over time: 2022 to 2024
The proportion of palliative care phases for people with dementia, for which family or carer problems improved or remained at a low level after intervention was stable, at 78% in 2022, 80% in 2023 and 80% in 2024.
These data come from the Palliative Care Outcomes Collaboration (PCOC).
PCOC is a national palliative care outcomes quality improvement program. The program uses standardised validated clinical assessment tools to benchmark and measure outcomes in palliative care, including pain and symptom control, and timely access to services when they are needed to drive quality improvements.
Participation in PCOC is voluntary and open to all palliative care service providers across Australia. Representation is sought from public and private health sectors, rural and metropolitan areas, and inpatient and community settings. However, not all services participate in PCOC and so the data only capture a subset of all palliative care delivered in Australia. A total of 228 services reported data to PCOC in 2024, and work is ongoing to expand this number.
Most services that report data to PCOC are specialist palliative care services, and it should be noted that many people with a life-limiting illness can be well managed by primary and community care providers and may not require these specialist palliative care services. National data on people accessing palliative care outside specialist settings are needed to complement PCOC data.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables and PCOC’s National Outcomes reports.
For more information, including on definitions of palliative care phases and assessment scales used, see the Technical notes.
Achterberg WP, Erdal A, Husebo BS, Kunz M and Lautenbacher S (2021) Are chronic pain patients with dementia being undermedicated?, Journal of Pain Research, 14:431–439, doi:10.2147/JPR.S239321.
Bryant J, Sellars M, Sinclair C, Detering K, Buck K, Waller A, White B and Nolte L (2022) Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities, BMJ Supportive & Palliative Care, 12(e3):19–28.
Eisenmann Y, Golla H, Schmidt H, Voltz R and Perrar KM (2020) Palliative care in advanced dementia, Frontiers in Psychiatry, 11:699, doi:10.3389/fpsyt.2020.00699.
PCOC (Palliative Care Outcomes Collaboration) (2012) PCOC version 3.0 dataset: data dictionary and technical guidelines, PCOC, accessed 6 October 2025