Breaking through dementia barriers

Work to help improve the quality of life and support for informal carers to people living with dementia in Australia is the focus of a new Flinders University research project.

Currently 47% of those from culturally diverse backgrounds living with dementia are informally cared for by family members who experience high levels of stress and social isolation and yet most receive little support due to cultural or linguistic barriers.

The project has received over $1.5 million from the Australian Government National Health and Medical Research Council and will be led by internationally recognised dementia caregiving researcher Professor Lily Xiao, from the Flinders College of Nursing and Health Sciences.

The project aims to address widely recognised problems faced by informal dementia carers by trialling a culturally tailored ‘iSupport model’ that will cater to their specific culture, their preferred language, as well as improving their access to the Australian health system.

“We know that many informal carers from diverse backgrounds do not have readily accessible resources and information in their preferred language to care adequately for their family members living with dementia,” says Chief Investigator Professor Lily Xiao.

Professor Lily Xiao

While these carers have made a significant financial, social and health contribution to the Australian society, they receive less support due to structural discrimination that prevents them from accessing care services to meet their care recipients’ needs, attaining dementia care education and social support in their preferred language.

“Current challenges for dementia caregivers from culturally and linguistic diverse groups include unmet care needs, uncontrolled chronic conditions, complications, low quality of life, avoidable hospital admissions and high costs to the health and social care systems,” said Professor Xiao.

The iSupport program has been developed and endorsed by the World Health Organization (WHO) and is available in English and seven non-English languages, Mandarin, Cantonese, Vietnamese, Bahasa, Greek, Italian and Spanish, with more language versions to be added in the future.

“By creating and implementing our iSupport model into routine dementia care services in multiple languages, we will bring a paradigm shift to the current system, which will serve to improve the health and quality of life for both caregivers and their families,” added Professor Xiao.

The project involves other researchers from Flinders University and the Western Sydney University.  It will also include partners from the Australian Nursing Home Foundation, Bolton Clarke, Chinese Australian Services Society, Community Access and Services, Greek Orthodox Community, Illawarra Shoalhaven Local Health District and the Society of Saint Hilarion.

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