Dementia in 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 Dementia Support Australia.

DSA provides key national support services that can be accessed independently and provide tiered levels of support for people with dementia, their carers and 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 DSA are the only national data source that collect Neuropsychiatric Inventory (NPI) information for people who experience BPSD, however these are only of people accessing their services. As such, DSA data are not representative of all people living with dementia or BPSD in Australia.

At intake and case closure, DSA 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 of the person with dementia is recorded during the referral process. Among assessments completed between July 2021 and June 2022, agitation was the most recorded primary behaviour, accounting for almost 35% of referrals. This was followed by physical aggression (25%), verbal aggression (11%) and anxiety (6.4%) (Figure 15.1a).

Figure 15.1a: Dementia Support Australia referrals between July 2021–June 2022, percentage by primary behaviours

Primary behaviours varied by age and sex

For some primary behaviours, a distinct trend by age group was evident. For example:

• Nighttime behaviours increased slightly with age between 65–69 and 95+.
• Physical sexual behaviours increased slightly with age until 80–84, and then declined between age 85–89 and 95 or over.
• Anxiety decreased between 0–64 and 70–74, and then increased between age 80–84 and 95 or over.

For the majority of primary behaviours, however, no age-related trends were discerned.   

In contrast to age, most primary behaviours varied by sex. Female clients were more likely than male clients to be assessed as having most behaviours, with the exception of physical sexual behaviour, physical aggression, night-time behaviour and disinhibition (Figure 15.1b).

Figure 15.1b: Dementia Support Australia referrals between July 2021–June 2022, percentage of primary behaviours by age and sex

Primary behaviours varied between Dementia Support Australia’s behaviour support programs

The Dementia Behaviour Management Advisory Service (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 Severe Behaviour Response Team (SBRT) is recommended.

Between July 2021 and June 2022, clients assessed for DBMAS and SBRT varied in primary behaviour. Almost 84% of primary behaviours assessed in SBRT referrals recorded physical aggression (63%) or agitation (21%) as a primary behaviour. While physical aggression and agitation were also the leading recorded primary behaviours within DBMAS assessments, they accounted for a lower proportion (combined 56%) of primary behaviours recorded.

Table 15.1: Dementia Support Australia referrals between July 2021–June 2022, percentage of primary behaviours by program

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 Service (NBA) is recommended to assess eligibility for Specialist Dementia Care Program (SDCP) placement. As the prevalence of people experiencing BPSD decreases as severity of the symptoms increase, there is a much smaller number of NBA referrals when compared with the SBRT and DBMAS programs. Between September 2019 and June 2022, a total of 525 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 (SDCP) placement. Of the referrals between September 2019 and June 2022, 31% were rated ineligible. Of these, around a quarter were rated ineligible due to extreme behaviours. 

Overall Neuropsychiatric Inventory (NPI) scores improved following engagement with programs

While the information presented above focuses on the primary behaviour clients present with, clients can experience multiple behaviours at once. Between January 2022 and June 2022 DSA clients presented with behaviour symptoms in an average of 5.4 domains out of the 12 NPI domains upon program intake, and 3.0 upon program exit (an overall reduction of 44%) (Table 15.2). 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. The average total severity score decreased between clients who were referred to a program compared to clients who were discharged from a program within the six-month period (11.2 compared with 4.4, respectively) (Table 15.2). Similarly, the average total distress score among carers at intake between January 2022 and June 2022 was 15.2, dropping to 5.3 among carers at exit from the program.

Table 15.2: Dementia Support Australia referrals between January–June 2022, total severity, total distress, and average number of NPI domains

 Source: Dementia Support Australia 2022

While DSA 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 January 2022 and June 2022, DSA had an average of 3.5 client referrals per residential aged care home in Australia and provided support to 1,674 (61%) residential aged care homes in Australia.