Australia’s ageing Culturally and Linguistically Diverse population
Australia’s population is culturally diverse. According to ABS (2016) data, older Australians speak over 260 different languages, and many older CALD adults are not proficient in English.
Following specific migration patterns, older CALD populations are growing faster than the older Australian-born, English-speaking population. The needs of various CALD communities and individuals within those communities vary considerably. The aged care system must be accessible and fair to all. For culturally and linguistically appropriate care to be provided, organisations and staff must recognise and respond to individuals of all cultural and linguistic backgrounds. There are often challenges faced by older CALD adults in accessing and engaging with services and supports. These barriers can be individual, cultural, structural and service related. Barriers often include poorer literacy and numeracy, lower health literacy and poor English. This can impact their health, well-being and quality of life, and may result in poorer employment, income, life satisfaction, social participation, less opportunity for informed decision making and increased risk of homelessness.
CALD diversity and intersectionality
Diversity both within and across Australia’s CALD communities must be recognised. Older CALD Australians are not a uniform group. There is much ‘diversity within diversity’, known as ‘intersectionality’, such as being lesbian, gay, bisexual, transgender or intersex, living with dementia, chronic disease or disability, receiving palliative care, suffering financial disadvantage, being at risk of homelessness, and living in rural and regional areas.
Intersectional risk means some individuals (especially those who belong to multiple groups) face more vulnerability and discrimination than others. An older CALD female can experience age, race, and gender discrimination - likely intensified if they identify as lesbian, gay, bisexual, transgender or intersex. Each person therefore requires a tailored approach. Aged care services must understand and be responsive to individual needs and preferences, and respect a person’s identity and diversity. Better access and targeted care should be provided to meet the care needs of people, particularly among those who are the most vulnerable.
Preferences and beliefs about religion, culture and language can differ between families, communities and even individuals. People may not necessarily follow all customs or beliefs associated with their identity. Some older CALD people identify with the culture they grew up in, not the culture in which they were born. A person may identify or belong to a particular culture even though they do not speak the language. Assumptions cannot be made as to an individuals’ preferences based on cultural, linguistic, or religious background. Health professionals and aged care workers should be providing care that reflects and responds to all individual needs across the following domains:
A human rights and person-centred approach to care ensures the needs of all individuals are met. It is important to ask people whether there are beliefs, practices, or customs which may affect the care provided.
People with refugee backgrounds are particularly vulnerable. New, emerging or more recently settled communities often lack established family and community networks and support. Refugees may be vulnerable due to pre-settlement experiences such as:
- physical and psychological trauma and torture
- lack of access to food, clean water, sanitation, shelter, education and health care in their countries of origin or transit
Factors which impact people with refugee backgrounds once in Australia may include:
- cultural differences
- limited English
- interpreter access
- racism and discrimination
- socio-economic disadvantage
- social isolation
- health system knowledge
- overall support networks
- housing and transport challenges
These barriers often contribute to older CALD adults’ health inequities by limiting access to health care and support.
What does culture shape?
Cultural background and lived experience shape many factors which can impact access and use of aged care services and palliative supports, including:
- English skills
- familial involvement
- decision making
- health beliefs
What are some cultural barriers to accessing care and supports?
Cultural barriers can impact older CALD adults’ access to appropriate health care and aged care, and palliative care and supports. Older CALD adults may feel foreign in environments outside of their home, particularly where their specific culture or language is not catered to. This can negatively impact health and well-being. Some of these challenges include:
- lack of awareness and knowledge of available services
- attitudes to family and caring responsibilities
- communication barriers in English
- cognitive impairment and/or dementia causing loss of acquired English
- illiteracy in the native language
- difficulty expressing their needs
- post-traumatic stress disorder or other trauma
- feeling ‘foreign’ or excluded in society
- specific gender preferences and role expectations
- concerns about privacy
- mistrust of authority or health care professionals
- the cultural importance of ageing in place and dying at home
- the taboo nature of, or resistance to, placing family into residential care
- difficulties associated with caring for family at home
- burden of care for CALD women
- extra burdens on informal carers when family members have dementia or cognitive impairment
- loneliness and isolation experienced by older CALD carers
- digital literacy
- food preferences
- importance of regular communication with individuals in the home country
- returning to the home country to care for others
- particular responsibilities as elders
- privacy and consent issues when using family as interpreters
- access to accredited interpreters and translators (rather than family)
- importance of maintaining cultural identity
- intergenerational culture change
- diverse health beliefs
- expectations of the health system
- lack of familial support
- isolation and fewer peers in older age
Which service barriers exist?
Many aged care services and supports do not provide culturally appropriate care. Staff may not be trained in providing culturally appropriate or safe care or may not reflect the Australian populations’ broader diversity. High staff turnover can limit the extent to which trust and rapport can be built with older clients and residents. Staff and services may assume that CALD adults pose added costs and workload. Some providers are unaware of the availability of translating and interpreting services or may decide not to use them. This may lead to miscommunication, misdiagnosis, dissatisfaction with services and other adverse outcomes. People in rural and remote areas often have access issues due to limited or no services in their communities and transport challenges, including increased distances to access services.
Which structural barriers exist?
The Australian health care and aged care systems can be difficult to navigate, even for English speakers. Structural barriers are heightened for older CALD adults, including:
- lacking awareness of available services or information
- information not being shared or marketed appropriately
- English language barriers
- institutionalised and overt racism
- inadequate cultural training for staff
- lacking understanding of the nuanced health needs of CALD individuals
Structural barriers often result in diminished use of services which would otherwise contribute positively to health outcomes.
CALD individuals and aged care
Older CALD adults are less likely to use services and supports than other Australians. Residential aged care options may be viewed negatively, with home care options preferred. According to Australian Institute of Health and Welfare (2015), older CALD Australians from non-English speaking countries represented 26% of total home care recipients, and only 18% of those in permanent residential aged care.
All older Australians have the right to inclusive, respectful and culturally safe aged care services and palliative care supports. The Aged Care Quality Standards include diversity elements throughout, requiring aged care providers to meet specific obligations, such as ensuring ‘each consumer is treated with dignity and respect, and their identity, culture and diversity is valued’. The Aged Care Diversity Framework is another useful resource.
CALD clients and residents, and their families and carers deserve the same access to information as others, and to feel confident in their choices. As more older adults access aged care services in future, providers must accommodate all needs sensitively and appropriately, in line with the Aged Care Quality Standards. Understanding individual and family needs and preferences is essential to providing aged care and palliative care consistent with a person’s values and beliefs. Health professionals and carers have their own cultural beliefs which influence the care provided. Providing culturally safe care is founded on respect for peoples’ background and lived experiences.
Culturally and linguistically appropriate care refers to a range of concepts, including:
These concepts represent targeted care, which reflects and is responsive to peoples’ specific social, cultural and spiritual needs. Using the cultural and linguistic characteristics, experiences and perspectives of individuals with diverse backgrounds allows us to deliver aged care services more effectively.
The following tips can assist in creating a supportive organisational environment to provide culturally responsive and safe aged and palliative care:
- identify care needs and preferences of residents and clients
- build workforce capacity and provide staff who can deliver care to address residents’ and clients’ needs
- provide access to information about care and supports in community languages and in accessible formats
- encourage the use of professional interpreting services (not family) in all conversations involving significant information with non-English speaking residents and clients.
The CALD Action Plan and Bolton Clarke’s Diversity Framework have a series of useful case studies for aged care. Partners in Culturally Appropriate Care (PICAC) organisations provide state and territory specific information and resources for providing care. The Centre for Cultural Diversity in Ageing has practical resources for delivering aged care to CALD individuals.
CALD individuals and palliative care
The National Palliative Care Standards highlight that ‘specific attention is paid to the needs of people who may be vulnerable or at risk, to support communication, goal setting and care planning’. CALD adults (especially those who are financially insecure) are underrepresented in palliative care, and may be more likely to die in non-hospice settings compared with the wider population. There is stigma around hospice care for some groups, especially where strong cultural and familial expectations of support exist. Palliative care is often misunderstood by older CALD adults, due to lack of awareness about existing services and supports. Research is required to better understand older CALD adults’ needs and preferences for end of life care, especially among non-English speakers. CareSearch have resources outlining key cultural considerations at the end of life, and palliAGED have resources relating to practice issues. The Victorian Government has some resources on providing palliative care to CALD clients.
How does culture impact death and dying?
Beliefs, values and preferences around death and dying differ across cultures. Western notions of patient autonomy, decision-making, self-determination, informed consent, truth telling and control over dying are not universally accepted values and may compete with other beliefs. Cultural and religious groups can have significant and varied death and mourning rituals. There are also many differences within groups. It is important that you speak with all older adults about their personal end of life preferences. Ask people about their beliefs, values and preferences concerning family, spirituality, care, dying, and palliative care. Starting a conversation can help uncover differences and similarities. For example, some believe discussing death is disrespectful, brings bad luck, eliminates hope, is akin to ‘giving up’ and causes depression or anxiety. This information is important to know as it will change the context and framing of conversations about care with the person and their family.
Cultural background impacts many factors associated with end of life experiences, including:
- preferred foods
- assumptions around care responsibilities
- familial care and involvement
- whether decision making is individual or shared
- advance care directive preferences
- the meaning of life
- the meaning of suffering
- preferences for sharing and receiving bad news
- disclosure of diagnosis to the dying individual and others
- whether speaking about death is taboo
- pain and symptom expression
- attitudes and practices about pain relief
- beliefs about complementary or alternative medicine
- life support preferences
- preferences around place of death
- practices around immediate care after death
- autopsy preferences
- organ donation preferences
- burial or cremation preferences
- bereavement responses
- grieving practices and rituals
Advance care planning among CALD communities
Advance care planning (ACP) is guided by Western values of autonomy and self-determination. The concept of such practice is not universally accepted, and these values may not be applicable to more collectivist groups. CALD adults are less likely to complete advance care planning documents and more likely to seek life-sustaining treatment than the wider population. Mistrust in the system or particular religious beliefs can also influence advance care planning decisions. For example, some CALD people may see it as being intrusive, or interfering with their sense of identity and family caring responsibilities. Health providers and carers should acknowledge different viewpoints about ACP and seek consent to have these discussions to help build trust and a respectful environment in which to provide care.
Increased awareness and understanding of ACP among older CALD adults is required. Language and literacy barriers can make ACP forms and other self-report forms difficult for older CALD people. Advance Care Planning Australia has fact sheets and other resources available for individuals, substitute decision-makers and care workers in 13 languages. Inform your staff and CALD residents and clients that they can contact the Advance Care Planning Advisory Service through an interpreter. Prioritise individualised discussions with all clients and residents, especially at the end of life. Diversicare have developed tips for communicating with CALD clients. For further information on diversity and culturally appropriate care, visit Federation of Ethnic Communities’ Councils of Australia (FECCA) and Multicultural Aged Care.