Dementia by its nature is alienating. Imagine how much worse the experience is, for both patient and carer, when language and cultural barriers shut them off from help.
Those are exactly the people Professor Lily Xiao is working to reach.
“We need to support the informal carers of people with dementia,” she says, “so they do not need to navigate the huge aged care system and healthcare system to discover which services are available for them.”
Professor Xiao has long experience in cross-cultural care for older people, particularly those living with dementia. She’s worked closely with cultural minorities and understands the importance of communication to the quality of care in aged care and dementia care.
Now, for the first time, Professor Xiao is rolling out a four-year, nationwide project to better equip dementia carers, called “Partnership in iSupport”. Originally developed by the World Health Organisation, it has been culturally adapted for Australia by Professor Xiao. She has received a total of $2 million in funding from the Australian Government to connect informal carers such as family, friends and neighbours with the help they need.
She will work with colleagues in the College of Nursing and Health Sciences and four industry partners – the Southern Adelaide Local Health Network (SALHN), Canberra Health Services, and aged care providers Resthaven in South Australia and Bolton Clarke in Victoria.
“In the first year we are going to work with stakeholders –informal carers, service providers, or the care workers and health professionals who provide the direct care for the people with dementia.”
“We are in phase one to find out a linkworker's roles and responsibilities. It responds to needs many informal carers have called for by linking them to services currently not available for people with dementia and their carers.
Linkworkers will provide one-stop shops for informal carers to find and access available care.
“We know people with dementia rely on family members to organise care services, but carers are not aware about the resources and the services, including education programs for them, that are available,” Professor Xiao says.
“If they have the linkworkers to support them, it will significantly reduce the stress and save the time, with access to people who understand aged care funding and how to apply to relevant services.”
This system will also provide support in co-ordinating other short-term services that are needed from time to time such as hospital-to-home transitional care, and services provided by physiotherapists and dieticians.
The second and third phases of the project will roll out an online iSupport program providing dementia care education for carers, combined with virtual peer support.