New program to empower CALD carers caring for someone with dementia

NARI says research shows that caring for older people with dementia at home can be overwhelming at times and be very intensive, especially for carers with CALD backgrounds and require support and information that cuts across language barriers.

It is estimated that carers with CALD backgrounds experience 2.5 times as much distress than other carers.

The Social Gerontology team at NARI is hoping that their new project, the Drawing Out Care Study, will improve on the issues CALD carers are facing by making information more accessible in a language they understand.

Bianca Brijnath, Professor at NARI, says the new resources are building on the World Health Organisation’s (WHO) iSupport Lite programme, which was adapted to the current community needs in Australia.

“With about 30 percent of older Australians being from a CALD background, increasingly from Asia, it is important to meet the needs of non-English speaking Australians with dementia and their carers,” says Professor Brijnath.

“This will be a trial of completely digital resources, co-designed with the community. We will be working with CALD family carers, clinicians, service providers, and people living with dementia, as well as our partners Dementia Australia, the Federation of Ethnic Communities Council of Australia (FECCA), and the WHO, to adapt WHO resources for local audiences.

“The clinical and cost effectiveness of the intervention will then be evaluated in a trial with 194 Italian, Greek, Mandarin, Cantonese, Hindi, Tamil, Arabic, Vietnamese, and Spanish-speaking carers.”

This program will be providing CALD families, carers, and people living with dementia with useful resources, including animations, digital fact sheets, and a multilingual chat bot, that will provide information whenever they need it to assist with living at home.

During the trial, researchers will be seeing if targeted, multi-language resources ease the pressure on carers, result in an improved mood and quality of life of carers, and boost the quality of life for the person living with dementia.

Professor Brijnath says, “We know CALD carers experience 2.5 times more psychological distress than other carers in our community. 

“It’s not always an easy road and there are different challenges, including high expectations on family members to provide care, and on women to shoulder that load.

“This project will test resources that are simple and accessible, with a chat-bot helping users find exactly what they need. It will give carers support any time of the day or night, when they need it, in their language and in English.”

This study is funded by the Federal Government’s Medical Research Future Fund and aligns with the current Dementia, Ageing and Aged Care Mission, which is aiming to support family carers to provide quality, and culturally appropriate, care at home to people with dementia

The Government also wants to improve the quality of life for the person with dementia and make sure their carers are supported in this as well.

NARI believes the results of this study will be transferable to other countries with CALD carers who face similar challenges and the results can be delivered to up to 12 other Asia-Pacific nations, including India and China.

Professor Brijnath says that the project has really large potential and could impact millions of people in low, middle and high income countries across the world.

“We simply must get better at ensuring every carer has the support they need, when they need it, and NARI is excited to see this project get off the ground,” says Professor Brijnath.

NARI will be working alongside project partners to develop this study, including Monash University, National Institute of Mental Health and Neurosciences, University College London, Flinders University, Dementia Australia, and Swinburne University of Technology. 

This project will run for three years and is currently in its early stages. The first 12 months of the project will be about co-designing the resources with members of the community, with wider testing to follow.