The number of people living with dementia is growing, and informal carers, such as family members, are relied upon to provide the bulk of care for people living with dementia, but often without crucial support mechanisms to assist them.
Health economist Dr Rachel Milte, a Matthew Flinders Senior Research Fellow at Flinders University’s Caring Futures Institute, is working on a project with Flinders University colleague Professor Lily Xiao providing research that will help provide a value for money solution – iSupport for Dementia, an online support program for carers of people living with dementia.
The research aims to prove the cost effectiveness of this online tool, developed by Professor Xiao and colleagues – and it represents the crucial next step in Flinders University’s involvement with the ground-breaking iSupport for Dementia program.
In Australia, 200,000 informal carers help people with dementia delay or avoid admission into an expensive residential aged care facility, yet these carers do not commonly receive preparation, support and education to take up this role – despite the many challenges and complex skills needed to provide adequate health and social care when taking on this role.
Professor Xiao and three international collaborators developed the World Health Organization iSupport for Dementia online program, as a simple and easily delivered provision of education and support to carers of people living with dementia. The program has already been piloted to test its effectiveness in an Australian context.
Now, the study will evaluate the iSupport online education program over six months. A Randomised Controlled Trial across South Australia, ACT and Victoria will work with partners in the Aged Care and Health Care settings to recruit 192 carers, who will complete questionnaires to measure their quality of life, physical and mental health, and level of self-efficacy for caring. Their interaction with the health system will also be measured.
“This project is all about supporting those who support others – the carers of people living with dementia,” explains Dr Milte. “Having dementia has been associated with a lot of stigmas, so carers have traditionally found it difficult to find support. Therefore, having access to support groups can help reduce a feeling of isolation among carers.
“It is essential they have access to formal and informal support networks, because dementia is a chronic and progressive condition. Symptoms of the person they are caring for will change and develop over time, and this is difficult for a carer to deal with.
“Having access to adequate support can prevent a carer from getting burnt-out. It can also delay or even avoid admission to a residential aged care facility for people living with dementia, providing a clear benefit to the individual person as well as society more broadly.
“Informal carers are a critical source of support for people living with dementia, and yet they are often undervalued or unacknowledged in broader society.”
The project to evaluate the iSupport for Dementia program is supported by a Dementia Centre for Research Collaboration World Class Research Project Grant, MRFF 2020 Dementia Ageing and Aged Care Mission Grant in Australia, and a National Foundation for Australia-China Relations 2020-21 Competitive Grant for work in Mainland China, Taiwan, Hong Kong and Macau.
The project is ongoing, with other chief investigators being aged care providers Bolton Clarke in Victoria and Resthaven in SA, along with SALHN (the Southern Adelaide Local Health Network) and Canberra Health Services.
“If successful, this project will enable informal carers of people living with dementia to have access to quality education, skills development, and support networks,” says Dr Milte.
“This will ensure they are able to provide care in a way that supports their own health and wellbeing and their relationship with their family member living with dementia.”