Dementia in Australia

Australia has a long and rich history of immigration, and as a result, the Australian population includes a large number of people who were born overseas, have a parent born overseas and/or who speak a variety of languages. These groups of people are generally referred to as culturally and linguistically diverse (CALD) populations. However, it is not always easy to identify CALD people or populations in data because the relevant information is not always systematically recorded. As a result of these limitations, this section mainly uses both country of birth and main language spoken at home to identify CALD populations.

Understanding dementia with respect to people of CALD backgrounds is essential for health and aged care policy and planning, as research suggests that the CALD community, or specific cultural subgroups may experience different patterns of disease, health risk factors and access to and utilisation of services (AIHW 2018). Widespread use of appropriate dementia diagnostic tools (such as the Rowland Universal Dementia Assessment Scale (RUDAS)) are needed to ensure diagnosis is not further delayed due to communication and cultural differences. Further, as people with dementia who can speak multiple languages will often revert to their first language or mix languages as their dementia progresses, this can lead to communication barriers that can cause feelings of isolation, loneliness, and anxiety and depression in those with dementia and result in their needs not being met.

Until more information is available, this page aims to explore dementia in CALD communities in Australia, using the currently available national data, by:

• examining patterns of cultural and linguistic diversity in people living with dementia 
• assessing the use of permanent residential aged care services by people with dementia from CALD backgrounds and how this compares with people from English speaking backgrounds (skip to this section)
• examining the source of assistance for people with dementia from CALD backgrounds and how this compares with people from English speaking backgrounds (skip to this section)
• exploring CALD among primary carers of people with dementia (skip to this section).

See Cultural linguistic diversity among Australians who died with dementia for patterns of CALD among people who died with dementia, using linked census and mortality data.

Expand the sections below for more information on what data are available to report on dementia in Australia’s CALD communities, limitations of these data and what is being done to improve them. 

CALD among Australians with dementia

According to the SDAC, in 2018, 28% of people with dementia in Australia were born in a non-English speaking country (Figure 13.1). This proportion is slightly greater than what is reported for all Australians aged 65 and over in 2018 according to the ABS Estimated Resident Population (23% of Australians aged 65 and over were born in a non-English speaking country).

Italy was the most common non-English speaking country of birth among those with dementia, accounting for 3.5% of all people with dementia in 2018. This is largely reflective of the post-World War II migration of Italians to Australia (ABS 2020). Greece and China were the next most common non-English speaking countries of birth among those with dementia (3.0% and 2.2%, respectively) (Table S13.2).

The SDAC also collected information on English proficiency for those whose main language spoken at home was not English. Around 62% of people with dementia whose main language was not English, reported that they either did not speak English or if they spoke English they did not speak it well (Table S13.3). 

Figure 13.1: Cultural and linguistic diversity among people with dementia and Australians aged 65 and over in 2018: percentage who were born in non-English speaking countries

It is important to note that there are a number of issues with using the SDAC to report on people with dementia, and further for those with dementia from CALD backgrounds. The SDAC may underestimate the number of people with dementia living in the community as it relies on people in the community self-reporting their health condition rather than a medical assessment. Issues of stigma associated with dementia may affect the likelihood that a person reports their condition in this survey, and this may vary depending on cultural background. In addition, language barriers and cultural practices may affect when people are diagnosed with dementia, meaning that people from CALD backgrounds may have greater levels of undiagnosed dementia than other Australians, especially among those who are not living in residential aged care. However, the use of proxy interviews for SDAC respondents who experience language barriers would minimise this issue. Despite this, the proportion of people with dementia from CALD backgrounds may still be underestimated by the SDAC data.   

Level of disability

According to the SDAC, in 2018, 67% of people with dementia who were born in non-English speaking countries and were living in the community had profound limitations. That is, they are unable to do, or always need help with self-care, communication and/or mobility (Figure 13.2). By comparison, 56% of people with dementia who were born in English speaking countries had profound limitations. However, this difference was not statistically significant. There was also no statistically significant difference in the percentage of people with dementia who had profound limitations by region of birth among those living in cared accommodation.

Figure 13.2: People with dementia with profound limitations in 2018: percentage by region of birth and place of residence

Co-existing health conditions

Based on the SDAC, in 2018, there were some distinct differences in the most common co-existing health conditions of people with dementia between people born in English speaking countries compared with those born in non-English speaking countries (Figure 13.3). These differences were mainly evident among those living in the community.

Among people with dementia living in the community, the following co-existing health conditions were most commonly reported among those who were born in non-English speaking countries:

• hypertension – reported in 42% of people born in non-English speaking countries
• diabetes – 33%
• high cholesterol– 31%
• back problems – 20%
• other deafness/ hearing loss – 19%
• depression – 14%.

Diabetes was reported significantly more among people with dementia born in non-English speaking countries than those born in English speaking countries (15%). There was no significant difference between common co-existing conditions reported by people with dementia born in non-English speaking countries to those born in English speaking countries.

Among people with dementia who were living in cared accommodation, diabetes was reported in 25% of people with dementia from non-English speaking countries compared with 16% of those with dementia born in English speaking countries. For all other health conditions, there were similar patterns between people born in non-English speaking countries and people born in English speaking countries.

The conditions shown in Figure 13.3 (besides back problems, arthritis and osteoporosis) are also known risk factors for dementia. See the What puts someone at risk of developing dementia? for more information.

Figure 13.3: Common co-existing conditions among people with dementia in 2018: percentage by region of birth and place of residence

CALD among Australians with dementia living in permanent residential aged care facilities

According to Aged Care Funding Instrument data, 21% of people with dementia living in permanent residential aged care facilities in 2019–20 were born in a non-English speaking country (Figure 13.4, see Residential aged care for more detail on this data). This is lower than the proportion of all people with dementia in 2018 as estimated by the SDAC (28%). Italy was the most common non-English speaking country of birth among people with dementia living in permanent residential aged care (4.0%). This was followed by mostly European countries, including Greece (2.0%), Germany (1.4%), and the Netherlands (1.2%).

The smaller proportion of people from CALD backgrounds in permanent residential aged care may reflect differences in how aged care services are used by people from CALD backgrounds. Use of residential aged care is likely to be affected by cultural attitudes to formal aged care services and family obligations or cultural norms for providing care, as well as variation in the availability of culture-specific residential aged care services. For some cultures, the responsibility of caring for the elderly population falls upon kin, and choosing residential care over a family member’s home may be taboo (Rees & McCallum 2018). For people of CALD backgrounds, it can sometimes also be difficult to access and utilise services, if services are not designed with CALD communities in mind and if there are language barriers between service providers and people from non-English speaking backgrounds. Considerations when designing a service accessible to members of the CALD community may include providing information in a number of languages and ensuring the availability of interpreters, food choices, access and respect of cultural practices and family, and general independence (Aged Care Quality and Safety Commission 2020).

Figure 13.4: People with dementia living in permanent residential aged care and the Australian population aged 65 and over in 2019–20: percentage who were born in non-English speaking countries

People with dementia from non-English speaking countries are more likely to rely on informal carers only

Based on the SDAC, in 2018 just under half (47%) of people with dementia who were living in the community and were born in non-English speaking countries and 30% who were born in English speaking countries relied on informal assistance only, as opposed to using formal services or a combination of formal services and informal assistance (Figure 13.5).

Among people with dementia, there were only slight differences by sex – 45% of men and 48% of women with dementia who were born in non-English speaking countries relied on informal assistance only. Whereas, 31% of men and 29% of women who were born in English speaking countries relied on informal assistance only.

Figure 13.5: People with dementia who lived in the community and received informal assistance only in 2018: percentages by region of birth and sex

Diversity among primary carers of people with dementia

It is not only the diversity of the people with dementia who need to be considered, but also their support systems (family and friends).

According to the SDAC in 2018:

• 32% of primary carers of people with dementia were born in a non-English speaking country – this was significantly greater than among primary carers of people without dementia (20%).
• 30% of primary carers of people with dementia usually spoke a language other than English to their care recipient – this was also greater than among primary carers of people without dementia (13%) (Figure 13.6).

There was no statistical difference in the proportion of male carers who usually spoke a language other than English to their care recipient with dementia than female carers (36% and 27%, respectively).

Refer to Carers of people with dementia for more information on carers of people with dementia including the relationship of carers to their care recipients.

Figure 13.6: Primary carers of people with dementia and people without dementia in 2018: percentage by sex and CALD characteristics