Dementia among people from culturally and linguistically diverse backgrounds
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, or numbers are too small to report at more granular levels. As a result of these limitations, this section mainly uses region of birth and main language spoken at home to identify CALD populations. For simplicity, this report refers to people who speak a language other than English as ‘non-English speaking’.
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 2023). For example, the Royal Commission into Aged Care Quality and Safety (2021) found that ‘the aged care system often struggles to provide appropriate care to people with diverse needs’ and that ‘there can be a lack of understanding and respect for people’s culture, background and life experiences’.
In addition, widespread use of appropriate dementia diagnostic tools (such as the Rowland Universal Dementia Assessment Scale (RUDAS)) is needed to ensure diagnosis is not delayed due to communication and cultural differences.
Further, people with dementia who can speak multiple languages will often revert to their first language or mix languages as their dementia progresses, which can lead to communication barriers that can cause feelings of isolation, loneliness, and anxiety and depression, 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 using data from the 2021 Census
- exploring CALD among primary carers of people with dementia (skip to this section)
- 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).
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.
Due to the limited national data on dementia that includes identifiers of CALD communities in Australia, data in this report are taken from:
- ABS 2021 Census of Population and Housing – a count of every person and every household in Australia on census night. It collects information about the population’s key characteristics, including country of birth, ancestry, year of arrival, and language spoken at home. In 2021, a new long term health condition question was asked that allowed people to self-report a dementia diagnosis (ABS 2022b). The new question enables analysis of self-reported dementia by a wide range of demographic information, including for CALD communities (Tables S13.1–8). The AIHW is currently assessing the new self-reported dementia data in the 2021 Census to help inform its use for dementia monitoring and planning.
- ABS Survey of Disability, Ageing and Carers (SDAC) – a national survey which collects information about 3 target populations: people with disability (that is, those who have a limitation, restriction or impairment, which has lasted, or is likely to last, for at least six months and restricts every-day activities), people aged 65 or over, and people who care for individuals with disability, or older people. These data identify Australians living with dementia and their carers, and record region of birth, main language spoken and English language proficiency (Tables S13.9–10).
- The Aged Care Funding Instrument (ACFI) data set (a data holding within the National Aged Care Data Clearinghouse (NACDC)) – identifies people with dementia who are living in permanent residential aged care, as well as recipient demographic data (including country of birth and main language spoken) (Table S13.11–12). As of October 2022, these data are no longer available. See Residential Aged Care page for more information.
Note: These data sources draw from different population groups and do not represent all Australians with dementia. For example, dementia is self-reported in the 2021 Census, it is only recorded if it contributes to a persons’ limitation, restriction or impairment in the SDAC and if it is a main condition impacting care needs in the ACFI. Not all people living with dementia are captured by these data.
See other AIHW reports on Culturally and linguistically diverse Australians.
Unfortunately, there are few national data sources that provide insight on the CALD community living with dementia in Australia. The Federation of Ethnic Communities’ Councils of Australia (FECCA) (2015) concluded that while there is a substantial body of research available evaluating the culturally sensitive tools for dementia diagnosis, there is little known about the experience of older CALD Australians with dementia, including diagnostic rates, age of onset, their experiences and interactions with medical professionals as well as broader health, aged care and social support services.
More high-quality data on CALD among people with dementia are required for service planning and development. To highlight and address these gaps, the then National Health and Medical Research Councils National Institute of Dementia Research (NNIDR) and the National Ageing Research Institute (NARI) published a CALD Dementia Research Action Plan. The plan aims to increase CALD inclusion in dementia research (NNIDR and NARI 2020).
The Australian Clinical Trials Alliance (2020a) has also published a position statement with guiding principles on recognising underrepresentation of people from CALD backgrounds and how to increase and enhance diversity in clinical trials. A review of national and international initiatives was also undertaken that have aimed to increase participation in clinical trials by ethnic minority groups. This aims to understand how to improve and develop clinical trial awareness, involvement and access for the CALD populations of Australia, and if successful, could offer a greater insight into Australia’s CALD population living with dementia (Australian Clinical Trials Alliance 2020b).
There are a number of risk factors for dementia which people born in certain countries may experience at different rates compared to people who were born and live in Australia. This includes increased mortality and hospitalisations rates from Type 2 diabetes mellitus and self-reported mental health conditions (AIHW 2005; Jatrana et al. 2017). However, people from CALD backgrounds are less likely to report drinking alcohol at harmful levels and are more likely to report that they have never smoked than English speakers (AIHW 2020). Analysis of 2021 Census data found that rates of specific chronic conditions varied depending on the measure of cultural and linguistic diversity used (AIHW 2023). More research is needed on the current prevalence of risk factors for dementia among people in Australia from CALD backgrounds, including sub-populations in the CALD community and how these are changing over time.
A common definition of CALD when using country of birth only is to exclude those born in:
- Australia
- the United Kingdom (England, Scotland, Wales, Northern Ireland)
- the Republic of Ireland
- New Zealand
- Canada
- the United States of America
- South Africa.
These countries were previously classified by the ABS as mainly English-speaking countries (MESC). The MESC classification was not an attempt to classify countries on the basis of their use of English, but a list of countries from which Australia received a significant number of migrants who were likely to speak English (ABS 2022a).
2021 Census data on CALD among Australians with dementia
It is important to note that there are a number of issues with using the 2021 Census to report on people with dementia, and further for those with dementia from CALD backgrounds. The 2021 Census may underestimate the number of people with dementia as it relies on people 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. For further information, see Social determinants of health among culturally and linguistically diverse people in Australia.
It should also be noted that the rate of “not stated” responses to questions in the Census are often relatively high for people with dementia, particularly for people living in residential aged care. When this is the case, the results should be interpreted with caution.
The AIHW is currently assessing the new self-reported dementia data in the 2021 Census to help inform its use for dementia monitoring and planning.
Region of birth
According to the 2021 Census, 25% of Australians aged 30+ years old who reporting having dementia were born in a non-English speaking country (Figure 13.1). This proportion varied by age, from 18% of people aged 30–64 (compared with 26% of all Australians) to 27% of people aged 85 and over (compared with 25% of all Australians). This difference may reflect greater levels of undiagnosed dementia among younger people from a non-English speaking country, and/or higher levels of dementia-related stigma (AIHW 2024).
Among people living with dementia aged 85 and over, a higher proportion of men were from non-English speaking countries (30%) than women (26%). This may partly reflect the prioritisation of male migration from some countries after World War Two (Wilson et al. 2020).
Figure 13.1: Proportion of people born in non-English speaking countries, by dementia status, sex and age, 2021
The bar chart shows similar proportions of people born in a non-English speaking country in Australians living with dementia and the Australian population aged 30 and over across sex and age. The most noticeable difference in proportion is in people aged 30–64 (where there was a smaller proportion of people with dementia born in non-English speaking countries than the general Australian population).
Country of birth
Consideration of birthplace composition is important to assess and plan for the cultural needs of people living with dementia. In the following sections, living in the “community” refers to private dwellings and self-care retirement villages, and “cared accommodation” refers to non-private dwellings such as residential aged care facilities and hospitals.
Of the people who reported having dementia in 2021, the most common countries of birth were (Figure 13.2):
- Australia – 56% of people in the community, 64% in cared accommodation
- England – 7.9% of people in the community, 7.8% in cared accommodation
- Italy – 4.4% of people in the community, 4.0% in cared accommodation
- Greece – 2.8% of people in the community, 2.0% in cared accommodation.
This birthplace composition is largely reflective of the waves of migration that have occurred since World War Two (Wilson et al. 2020).
There was a smaller proportion of people with dementia born in non-English speaking countries living in cared accommodation (35%) than those born in English speaking countries (45%; Table S13.1b). For more information on the reasons why people with dementia born in non-English speaking countries are less likely to be living in aged care, see CALD among Australians with dementia living in permanent residential aged care facilities.
Figure 13.2: Top 20 countries of birth among people who reported having dementia: percentage by sex, age and place of residence, in 2021
The bar chart shows that China, New Zealand, and Vietnam are the next most common countries of birth after Greece for people living in the community, while Germany, Scotland and New Zealand are the next most common countries of birth for people living in cared accommodation.
Ancestry
Ancestry reporting provides additional detail about a person’s cultural affiliations. Respondents were able to report up to two ancestries in the 2021 Census.
Of those who reported having dementia in 2021, 89% in the community and 91% in cared accommodation reported having English, Australian, Irish or Scottish ancestry. The next most common ancestries were:
- Italian – 5.9% of people in the community, 5.5% in cared accommodation
- German – 5% of people in the community, 3.8% in cared accommodation
- Chinese – 3.6% of people in the community, 1.8% in cared accommodation
- Greek – 3.4% of people in the community, 2.5% in cared accommodation (Table S13.3).
English proficiency and years since arrival in Australia
In 2021, among people who reported having dementia and whose main language spoken at home was not English (Figure 13.3):
- over half (52%) of those living in the community did not speak English well or at all
- just under a third (31%) of those living in cared accommodation did not speak English well or at all
- a higher proportion of women than men did not speak English well or at all
- the proportion of people who did not speak English well or at all increased with age.
Among people who reported having dementia and whose main language spoken at home was not English, English proficiency increased with the number of years since arriving in Australia:
- 81% of recent migrants (0–5 years since arrival) did not speak English well or at all
- 52% of earlier migrants (15 years or more since arrival) did not speak English well or at all (Table S13.5).
Figure 13.3: English proficiency among people who reported having dementia and speak a language other than English at home: percentage by place of residence, sex and age, in 2021
The bar chart shows that men and women of all ages with dementia who were born in a non-English speaking country were more likely to report that they did not speak English well.
Religious affiliation
Christianity was the most commonly reported religious affiliation among people who reported having dementia in 2021, both in the community and in cared accommodation (70% and 63%, respectively) (Table S13.6). About 1 in 5 people reported no religious affiliation, with smaller proportions of people (2% or less) reporting religious affiliation with Buddhism, Islam and other religions.
Need for assistance with core activities
In 2021, people who reported having dementia who were living in the community and were born in a non-English speaking country were more likely to need assistance with core activities (83%) than people with dementia born in an English-speaking country (74%) (Figure 13.4). Core activities include areas of self-care, mobility and communication.
Among those living in cared accommodation, a higher proportion of people needed assistance with core activities (90%), with no difference by region of birth.
Figure 13.4: People who reported having dementia and needing assistance with core activities: percentage by region of birth, place of residence, and sex, in 2021
This bar chart shows that people living with dementia in cared accommodation have similar assistance needs regardless of their birth region, while those in the community have different assistance needs depending on their region of birth.
Co-existing health conditions
In 2021, among people who reported having dementia, the most commonly reported co-existing health conditions for those born in non-English speaking countries were:
- Arthritis –34% of people in the community, 31% in cared accommodation
- Mental health conditions – 23% of people in the community, 42% in cared accommodation
- Heart disease – 23% of people in the community, 23% in cared accommodation
- Diabetes – 26% of people in the community, 20% in cared accommodation.
Diabetes was reported more frequently among people born in non-English speaking countries than those born in English speaking countries (Figure 13.5).
It is important to note that the prevalence of some conditions like diabetes, regardless of dementia status, are generally higher amongst people born in non-English speaking countries than those born in Australia. For more information see Chronic Health Conditions among Culturally and Linguistically Diverse Australians, 2021.
Figure 13.5: Common co-existing health conditions among people who reported having dementia: percentage by region of birth, place of residence, sex and age in 2021
The bar chart shows that among people with dementia living in the community, 26% of those born in non-English speaking countries reported having diabetes, compared to 18% born in English speaking countries. In cared accommodation, 20% born in non-English speaking countries had diabetes, compared to 13% born in English speaking countries.
CALD 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 Survey of Disability Ageing and Carers (SDAC) in 2018:
- 32% of primary carers of people with dementia were born in a non-English speaking country – this was significantly higher than primary carers of people without dementia (20%) (Table S13.9).
- 30% of primary carers of people with dementia usually spoke a language other than English to their care recipient – this was also higher than 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: percentage by sex and CALD characteristics, in 2018
This bar chart shows how primary carers of people who live with dementia are more likely to be born in a non-English speaking country or speak a language other than English to their care recipient than primary carers of people who are not living with dementia.
CALD in permanent residential aged care facilities
This section previously used health condition data from the Aged Care Funding Instrument (ACFI) to identify people living with dementia. In October 2022, the ACFI was replaced with the Australian National Aged Care Classification (AN-ACC) funding model, which does not capture health condition information. Therefore, the most recent data for this section are from 2021–22, with no further updates. The AIHW is working with the Department of Health and Aged Care to determine appropriate methods to capture data on people living with dementia in aged care.
According to Aged Care Funding Instrument data, 21% of people with dementia living in permanent residential aged care facilities in 2021–22 were born in a non-English speaking country (Table S13.11, see Residential aged care for more detail on this data). This is lower than the proportion of all people aged 30 and over who reported they had dementia in the 2021 Census (25%).
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 and 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).
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