When love speaks in forgotten tongues: How dementia steals our second language

For Antonio and Victoria Garcia, married for more than 64 years, their shared English conversations have become a thing of the past. Now, when Antonio wants to comfort his wife, he must reach back to the Spanish of their teenage courtship in Spain six decades ago.

Victoria, in the advanced stages of dementia, represents one face of a growing challenge across Australia.

There are 447,115 Australians living with dementia, and for the significant number from multicultural backgrounds, the condition doesn't just steal memories—it steals the language that connected them to their adopted home.

The silent retreat to mother tongue

Victoria's daughter, Cecilia Leha, watches her mother's world shrink with each passing day.

Living in Dapto, south of Sydney, Victoria now 'mumbles, makes no sense, barks, screams and makes funny noises just to convey her feelings,' her daughter explains.

But here's what makes Victoria's journey particularly poignant: she still responds to Spanish, even when English now feels foreign and agitating.

'Even in her state at the moment, she still doesn't like it [English]. She will get annoyed and show her frustration,' Ms Leha said.

Yet when Spanish-speaking support worker Michaela arrives, something remarkable happens—Victoria calms.

'Mum somehow can understand that language is her language, there's something about it that really calms her.'

Why our first language holds on

While researchers are still unraveling the complete picture, evidence suggests our earliest learned languages are stored differently in the brain, making them more resistant to dementia's damage.

The emotional connections formed when learning our mother tongue seem to create stronger neural pathways that persist even as other language skills fade.

Language loss is one of the most difficult aspects of dementia, as illustrated by the story of one resident who 'had four languages but unfortunately as her dementia progressed she made sense in none of the languages and our staff found it very distressing that they could not communicate with her and help her with her needs.'

For Antonio Garcia, having Spanish-speaking support has transformed his ability to connect with Victoria.

'I can see my wife just completely different,' he says. 'I'm very, very happy. I am comfortable now that if anything happens, she's going to be taken care of.'

The hidden crisis in multicultural dementia care

Victoria's experience reflects a much larger challenge across Australia. Research shows that 42 of the 94 registered active dementia clinical trials in Australia (45 per cent) 'excluded patients not fluent in English', meaning people from culturally and linguistically diverse backgrounds 'may receive inequitable dementia care as there is less evidence to help optimise clinical and service decisions'.

The numbers are staggering. It's estimated 1.2 million people are involved in caring for those with dementia, but Australia faces a shortage of more than 150,000 paid and unpaid carers within 15 years, with almost a quarter of the demand in the multicultural sector.

Danijela Hlis, who has worked as a multicultural and bilingual support worker for approximately 25 years, calls it heartbreaking. Too many people in care who have reverted to their mother tongue become 'lost in a silent and unfriendly world.'

New protections on the horizon

There's hope ahead. From 1 November 2024, all Australian aged care providers must comply with the new Aged Care Act, which enshrines the rights of those accessing aged care to communicate in their preferred language.

The Act comes with teeth—civil penalties of more than $1.5 million depending on the severity of the breach.

'We introduced standards which give us human rights to our identity and culture, but when this is not respected, nobody gets punished.

There are no fines, there are no consequences,' Ms Hlis explains. The new legislation aims to change that reality.

Practical steps families can take now

While systemic change develops, families don't have to wait. Ms Hlis offers practical advice drawn from 25 years of experience:

Work with what you have: 'Liaise with the family if the person is lucky enough to have somebody in the family who speaks the language.'

Create familiar soundscapes: 'You can find radio and TV programs in the client's language and put it on for them because often they no longer operate the remote control.'

Connect with community: 'Find out if there are any bi-cultural clubs or churches nearby, provide occasional culture-appropriate meals.'

For families seeking support workers, research from Hireup shows nearly one in five older Australians consider it essential to have care at home from someone who speaks their language.

The organisation reports 'significant demand' for support workers who speak languages including French, Spanish, Italian, Cantonese, Greek, Hindi, Arabic and German.

The workforce challenge ahead

The demand for multilingual care workers highlights a broader challenge facing Australia's aged care sector. Laura O'Reilly, chief executive of Hireup, explains the complexity: 'It's not just about funding a human being and sending them to someone's home... You need the supply, but you also need the right type of supply.'

The sector faces 'big workforce challenges' around staff shortages, recruitment and retention. 'We need lots of people from different language backgrounds, different personality types, different interests, to be able to then match well with the person that they're caring for.'

This matching process becomes even more critical when dementia enters the picture, as the window for building new relationships and trust narrows significantly.

Looking toward understanding

As Australia's population ages and becomes increasingly diverse, stories like Victoria and Antonio's will become more common. The challenge isn't just medical—it's cultural, linguistic, and deeply human.

For families facing similar journeys, the message from experts is clear: language matters, culture matters, and there are resources available to help maintain these crucial connections even as dementia progresses.

The new legal protections, combined with growing awareness and innovative support services, offer hope that fewer families will have to navigate this challenging path alone.