Dementia in Australia

This page provides statistics and information on:

Behavioural and psychological symptoms of dementia (BPSD) are often associated with complex care needs, with those affected requiring support from a number of health teams and professionals. BPSD is associated with carer stress, increased duration of hospitalisation and greater likelihood of placement in a residential care home (NSW Health 2013). In Australia, there are a range of services available to support people experiencing BPSD, including programs supported by funding from the Australian Government.

Services offered by Dementia Support Australia

Dementia Support Australia (DSA) is a service led by HammondCare’s Dementia Centre and funded by the Australian Government. Learn more about DSA’s aims and services in Overview of dementia support services and initiatives.

DSA provides key national support services that can be accessed independently and provide tiered levels of support for people with dementia, their carers and registered aged care providers. These include:

• Dementia Behaviour Management Advisory Service (DBMAS)
• Severe Behaviour Response Teams (SBRT)
• Needs Based Assessment program, which determines eligibility for the Specialist Dementia Care Program.

Currently Dementia Support Australia are the only national data source that collect Neuropsychiatric Inventory (NPI) information about people who experience BPSD, however this only captures people accessing their services. As such, Dementia Support Australia data are not representative of all people living with dementia or BPSD in Australia.

At intake and case closure, Dementia Support Australia routinely administers the Neuropsychiatric Inventory – Questionnaire (NPI-Q) and Neuropsychiatric Inventory – Nursing Home (NPI-NH) for DBMAS and SBRT clients, respectively. Both instruments assess BPSD across three shared metrics: the total number of behaviours exhibited by the client, the total severity of these behaviours, and the total distress these behaviours cause formal and informal caregivers. In addition, the primary behaviour (indicating the main reason for referral) of the person with dementia is recorded during the referral process. 

Among assessments completed between July 2023 and June 2024, agitation was the most commonly recorded primary behaviour, accounting for over one third (35%) of referrals. This was followed by physical aggression (25%), verbal aggression (12%) and anxiety (6.9%) (Figure 16.1a; Table S16.4).

Figure 16.1a: Dementia Support Australia referrals between July 2023–June 2024, percentage by primary behaviours

Trends in primary behaviours by age and sex

The primary behaviours, or main reason for referral to Dementia Support Australia services, varied by age and sex:

• clients aged 85 or older were more likely to be referred for agitation and delusions and less likely to be referred for disinhibition compared to younger clients
• clients aged under 65 were more likely to be referred for apathy/indifference, hallucinations and irritability/lability compared to older clients
• clients aged 75 to 84 were more likely to be referred for physical aggression compared to other clients
• clients aged under 65 or over 95 were more likely to be referred for nighttime behaviours and less likely to be referred for physical sexual behaviour compared to other clients
• male clients were more likely to be referred for physical aggression, physical sexual behaviour, disinhibition and nighttime behaviours compared to female clients
• most other behaviours were more common in female clients than males, particularly agitation, anxiety and appetite/eating (Figure 16.1b; Table S16.3 and S16.4).

Figure 16.1b: Dementia Support Australia referrals between July 2023–June 2024, percentage of primary behaviours by age and sex

Trends in primary behaviours by behaviour support program

The DBMAS is a program designed to provide proactive support early on, where there is less risk related to behaviour. For people living with dementia who are experiencing severe behaviour and psychological symptoms, the SBRT is recommended.

Between July 2023 and June 2024, most clients assessed for DBMAS and SBRT had agitation, physical aggression and verbal aggression as their primary behaviour.

• Clients assessed for DBMAS were most likely to have agitation (37%), followed by physical aggression (20%) and verbal aggression (13%)
• Clients assessed for the SBRT were most likely to have physical aggression (61%) followed by agitation (21%) and verbal aggression (7.0%).

Source: DBMAS and SBRT program data supplied to AIHW by Dementia Support Australia.

Severe BPSD requires specialist care 

Although rare, BPSD can be severe enough that highly specialised care is needed above that provided by SBRT. For clients requiring specialist accommodation, care and support, the Needs Based Assessment program (NBA) is recommended to assess eligibility for Specialist Dementia Care Program placement. As severe BPSD is less common than mild or moderate BPSD, there is a much smaller number of NBA referrals when compared with the SBRT and DBMAS programs. Between July 2023 and June 2024, a total of 372 NBA referrals were assessed.

The NBA program assesses eligibility with three key principles:

• behaviours and psychological symptoms are primarily the result of dementia
• symptoms are severe or very severe
• symptoms have remained non-responsive to adequate trials of treatment, including non-pharmacological interventions and other specialist programs.

Assessments may be rated ineligible for a number of reasons, including severity not being evaluated as high enough. Conversely, assessments may be rated as ineligible due to behaviours being too severe for Specialist Dementia Care Program placement. Of the referrals between July 2023 and June 2024, 23% were rated ineligible. Of these, around one in seven (14%) were rated ineligible due to extreme behaviours.

Neuropsychiatric Inventory (NPI) scores improved following program engagement

While the information presented above focuses on the primary behaviour clients present with, clients can experience multiple behaviours at once. Between January 2024 and June 2024, Dementia Support Australia clients presented with behaviour symptoms in an average of 5.1 domains out of the 12 NPI domains upon program intake, and 2.6 upon program exit (an overall reduction of 49%) (Table 16.1). This decrease demonstrates the effectiveness of tailored services for BPSD management, and supports findings from a 2021 evaluation on the clinical impact of these programs on neuropsychiatric outcomes (Macfarlane et al. 2021).

Other measures included in the NPI are total severity of behaviours and total distress/disruptiveness of behaviours to formal and informal carers. Over the same period between January 2024 and June 2024, the average total severity score decreased by 64%, from 10.2 at program intake to 3.7 at exit (Table 16.2). Similarly, the average total distress score among carers decreased by 67%, from 14.1 at intake to 4.6 at exit from the program.

Source: DBMAS and SBRT program data supplied to AIHW by Dementia Support Australia.

While Dementia Support Australia aims to provide support for people with dementia and their carers, programs also aim to support residential aged care homes in their support of people experiencing behavioural symptoms. Between July 2023 and June 2024, Dementia Support Australia had an average of 6.8 client referrals per residential aged care home in Australia and provided support to 2,284 (87%) residential aged care homes in Australia.