Research aims to improve health services for dementia sufferers

Researchers from Southern Cross University and the University of Sydney are reaching out to bereaved family caregivers to do an online survey so they can learn how health services might better support people living at home with dementia.

More than two thirds of Australians with dementia live at home and rely on a mixture of support and care from families, friends and outreach health services. Latest estimates put the number of Australians with dementia at 332,000, a figure that is expected to treble by 2050.

Despite the scale of the issue, little is known about whether home-based dementia patients and their carers are sufficiently supported.

In an effort to learn more, the researchers are hoping to speak to bereaved family caregivers who’ve cared at home for family member with dementia.

Professor Iain Graham, Dean of Health and Head of the School of Health and Human Sciences, said the project aimed to discover what the gaps were in the services provided for dementia sufferers and their carers, particularly at the end-of-life.

“We know that the majority of people would prefer to die at home if they were comfortable and well supported. However our health system is ill-equipped to provide the necessary support for people with dementia, or the people caring for them,” Professor Graham said.

“Through this research we want to better understand the issues and challenges for patients and carers so we can develop appropriate models of end-of-life care.”

Professor Yun-Hee Jeon, a University of Sydney scholar leading the study, said many people with dementia were still admitted to hospital and residential care settings during the terminal part of their illness, and often didn’t receive adequate palliative care services.

“Furthermore, aggressive treatment at hospital for people with the advanced stage dementia is often inappropriate for medical reasons and may not be in the person’s best interests. With proper support, advance-care plans and guidance from clinicians, people with dementia are more likely to maintain a high quality life and end-of-life experience,” Professor Jeon said.

The study will include an online survey followed by interviews with carers and health professionals.

How to support this research via an online survey

Are you a family member, friend or relative of a person with dementia who has died in the previous two years? Researchers from the University of Sydney and Southern Cross University invite you to participate in an online survey. We are investigating the issues, challenges and processes of providing end of life care for people with dementia.

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