For migrants, dementia can mean losing a language – and a whole world

You may have lived in Australia for most of your adult life, speaking English every day. But if you acquired the language later in life and then develop dementia – a brain condition that affects thinking, memory and everyday function – you may lose fluency and find the language you spoke as a child takes over again.

For many migrants, this is the confronting reality. Language loss affects not only how they communicate with doctors and carers, but also how they connect with family, friends and the world around them.

More than one in four (28%) people living with dementia in Australia is from a culturally and linguistically diverse background.

This means language changes in dementia aren’t a niche issue – they affect thousands of families. It is estimated that 411,100 Australians were living with dementia in 2023.

How does dementia affect language?

Dementia can cause changes to speech and language, and these are often early symptoms. People may repeat themselves, have trouble finding the right word, switch topics unexpectedly or use words in unusual ways.

But these language changes can affect bi- or multilingual people differently.

Dementia usually affects the parts of the brain that store more recently acquired skills, including languages.

Languages learned during childhood are more deeply embedded in long-term memory than recently acquired skills.

This means someone who moved to Australia in their 20s and then learned English may lose their ability to speak it when they develop dementia later in life. But they may retain the ability to communicate in a first language – such as Italian, Arabic, Greek or Vietnamese – and revert to using only this.

Losing a second language means more than losing a skill. Migrants with dementia may be losing part of the life they’ve built, returning to a version of themselves from decades ago, which family and carers might not recognise.

The language gap in dementia care

While interpreters are widely available in aged care and to assist people with dementia, most lack specialised training.

Without this knowledge of dementia-specific communication, even skilled interpreters can struggle to communicate tone and meaning and recognise dementia symptoms.

Trained health interpreters are scarce outside major cities, and in regional areas family members are often heavily relied on.

But interpreting for a loved one with dementia is no easy task. Research shows family carers from culturally and linguistically diverse backgrounds face added stress thanks to language and cultural barriers. Many provide unpaid care and feel isolated.

For instance, a daughter caring for her mother with dementia might struggle to understand medical terms, while at the same time dealing with her own grief and exhaustion.

Some elderly people may also not want to discuss personal health details in front of their children or other relatives.

Burnout is a huge issue for family members and can sometimes lead to errors in care.

Read more: 'Cold violence' – a hidden form of elder abuse in New Zealand's Chinese community

So, what works?

Evidence shows dementia-aware language services and culturally responsive care can help reduce stress for carers and improve quality of life for people living with dementia.

In a 2023 clinical trial, Australian researchers co-designed and evaluated specialist online training for interpreters. These included modules on dementia, aged care and cross-cultural communication.

The study found the training significantly improved the quality of interpreters’ communication during cognitive assessments of people with dementia, which are used to work out what supports someone might need.

This training has since been made available for free to all interpreters in Australia. At least 13% of the active interpreter workforce has completed it so far.

Dementia Support Australia also provides language support for people with dementia and their carers, arranging interpreters, translated materials, and Auslan services when needed.

There are also various initiatives in different states and territories, such as the “language buddies” program in Victoria which help people with dementia reconnect with community.

But we still need to do more

Despite these positive developments, there is still more to do to ensure diagnosis and support for people with dementia are not delayed due to cultural and language barriers.

We need to continue expanding supports, including:

1. Specialist dementia training for interpreters: to handle repetitive speech, non-linear conversation and culturally specific expressions.

2. Language and dementia awareness training for health workers: to understand why language loss happens and how to adapt care to address cognitive decline and also consider overall wellbeing.

3. Better matching of interpreters: including age, dialect and cultural familiarity, especially in dementia-related contexts.

4. Expanding the bilingual workforce: hiring more health-care workers who share the languages and cultures of local communities, particularly in rural, regional and remote areas.

5. Culturally tailored dementia resources: booklets, videos, and support groups in multiple languages, co-designed with community members.