Culturally and linguistically diverse people with dementia
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 chapter 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 (skip to this section)
- 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).
- 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 People in residential aged care page for more information.
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 with the aim to clinical trial awareness and participation in clinical trials by ethnic minority groups. Strategies from the review include culturally appropriate communication strategies, engaging CALD communities early and consistently, ensuring health care professionals are culturally competent and clinical trial literate, and to develop inclusive clinical trial design and support services. If successful, such initiatives 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. People born overseas may have higher prevalence for certain chronic conditions than the Australian-born population, such as Type 2 diabetes mellitus, a known risk factor for dementia (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.
There are ongoing efforts to improve the accuracy of dementia prevalence estimates in Australia, including for CALD communities. See 3: Dementia prevalence and incidence of the National Dementia Data Improvement Plan 2023–2034 for information on current developments and future activities aimed at improving dementia prevalence data
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. The mainly English-speaking countries 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).
Key findings
ABS (Australian Bureau of Statistics) (2022a) Cultural diversity of Australia ABS, Australian Government, accessed 26 June 2023.
ABS (2022b) Health: census, ABS, Australian Government, accessed 1 July 2022.
AIHW (Australian Institute of Health and Welfare) (2005) Diabetes in culturally and linguistically diverse Australians, AIHW, Australian Government, accessed 26 June 2023.
AIHW (2020) Alcohol, tobacco & other drugs in Australia, AIHW, Australian Government, accessed 18 September 2020.
AIHW (2023) Chronic health conditions among culturally and linguistically diverse Australians, 2021, AIHW, Australian Government, accessed 16 July 2024.
Australian Clinical Trials Alliance (2020a) Advancing clinical trial awareness, involvement and access for people from CALD backgrounds: position statement, accessed 24 August 2021.
Australian Clinical Trials Alliance (2020b) ACTA Clinical trial awareness and access amongst culturally and linguistically diverse (CALD) populations: environmental scan, accessed 28 August 2020.
FECCA (Federation of Ethnic Communities’ Councils of Australia) (2015) Review of Australian Research on Older People from Culturally and Linguistically Diverse Backgrounds, FECCA website, accessed 4 July 2023.
Jatrana S, Richardson K and Samba SRA (2017) Investigating the dynamics of migration and health in Australia: a longitudinal study, European Journal of Population, 34: 519 – 565, doi:10.1007/s10680-017-9439-z.
NHMRC (National Health and Medical Research Council), NNIDR (National Institute for Dementia Research) and NARI (National Ageing Research Institute) (2020) Culturally and Linguistically Diverse (CALD) Dementia Research Action Plan, NHMRC website, accessed 4 July 2023.
Royal Commission into Aged Care Quality and Safety (2021) Royal Commission into Aged Care Quality and Safety, Royal Commissions, accessed 15 August 2024