Who cares for those who take care of people living with dementia? Often, this taxing role is undertaken in Australia by carers born in other countries, from other cultures and who communicate in languages other than English – yet these people have the least resources available to help them cope with their difficult caring responsibilities.
Professor Lily Xiao leads a team at Flinders University’s Caring Futures Institute that has been developing a crucial online tool that can provide better assistance for these people – so they can continue to provide the best care for people with dementia.
Over the past five years, the culturally-tailored iSupport model of care (CT-iSupport) for carers has been developed as a culturally tailored online information and support tool, co-designed by Flinders researchers in cooperation with aged care industry partners including the Australian Nursing Home Foundation (NSW), Chinese Australian Services Society (NSW), Community Access and Services (SA), Multicultural Aged Care with Greek Welfare Centre (SA), Murray Mallee Aged Care Group (SA), Pronia (Victoria) and the Spanish Latin American Welfare Centre (Victoria).
This vast project has been realised through funding support from 2022 NHMRC TCR,
This vast project has been realised through funding support from 2022 National Health and Medical Research Council Targeted Call for Research (NHMRC TCR), National Foundation for Australia-China Relations, Aged Care Research & Industry Innovation Australia (ARIIA) and the Medical Research Future Fund (MRFF).
“It has important dual benefits – providing assistance for carers from Culturally and Linguistically Diverse (CALD) communities, and also significant benefits for older people with dementia who do not speak English well,” says Professor Xiao.
This model includes facilitator-enabled dementia care education using the World Health Organisation (WHO)-endorsed iSupport for dementia program, plus peer support and access to care services in the carer’s preferred language and culture. There are also published versions of iSupport manuals in eight languages, which are free for carers to access and utilise.
“We invited industry partners to submit real cases in dementia care, then we redeveloped these cases for education purposes so that carers and staff with lived experiences could review the case studies and co-create videos to simulate the case studies,” says Professor Xiao. “It was an important breakthrough, because it was the first opportunity many of these people had to voice their opinions and have their ideas for improvement heard.
“The co-design process also informed our team of the need to develop resources to enable coaching activities between iSupport facilitators and carers, to address challenges that carers face but are not included in the iSupport manuals.
“It is a truly cost-effective way to connect this important training and information to carers.”
The research team has translated the model into care services with industry partners that provide community aged care services to people with dementia whose native language is Cantonese, Mandarin, Greek, Indonesian, Italian, Spanish and Vietnamese.
The research team has also been able to continue expanding the reach of the CT-iSupport model, even as it is being tested in the community. During the trial phase, the researchers learned of increasing demand for dementia support within the South Korean community based in Sydney, and so the CT-iSupport model will be expanded to also include the South Korean language and other languages that our community needs.
“It is exciting to know that the CT-iSupport model is so strong that it can be quickly adapted and expanded to include other languages and cultural groups. It proves that international ramifications for this model are huge.”
The project is in its third and final stage, having developed the CT-iSupport model to include several different languages and cultural groups, and having completed tests with three Chinese-ethno-specific aged care organisations that co-invested in the trial – Australian Nursing Home Foundation, NSW; Chinese Australian Services Society, NSW and Chinese Welfare Services SA.
More iSupport trials are being conducted with Adelaide Primary Health Network, Carers SA, Chinese Welfare Services SA, The Benevolent Society (NSW) and Holstep Health (Victoria).
The program is now being rolled out nationally, with the CT-iSupport model being embedded into routine dementia care services delivered by aged care providers. It is hoped this phase will be completed by the end of 2026.
Importantly, the model has clearly demonstrated positive impact on carers’ quality of life, self-efficacy and mental health.
“Caring for people living with dementia can lead to physical and mental stress and social isolation. The carers are presented with great difficulties – having to provide for people with dementia who have lost their self-care abilities, from eating, dressing and washing, through to such important health concerns as infection and preventing falls,” explains Professor Xiao.
“Just having a stronger support mechanism relieves stress for these carers, and the CT-iSupport model provides this by connecting carers with a peer group who speak their own language.
“Our research will also make a difference by reducing avoidable hospital admissions and emergency department use by people with dementia and their carers, improving their experience and also reducing costs and pressures on the health care system.”
CT-iSupport for dementia training manuals are available on the Flinders University site: https://fac.flinders.edu.au/search?spc.page=1&query=isupport