11:32pm Tuesday 22 October 2019

Researchers reach out to bereaved families who've cared for loved ones 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, University of Sydney researchers are reaching out to speak to bereaved family caregivers who’ve cared at home for family member with dementia.

“We want to learn more about their loved ones’ needs and experiences, and how family carers themselves could be better assisted, especially in supporting the end of life dementia care of people who died at home,” says Professor Yun-Hee Jeon, a University of Sydney scholar leading the study.

“Aged care policy in Australia encourages community-based care so that people can be supported in a familiar home – or home-like – environment. However, our health system is ill-prepared for people with dementia, who can’t always voice their wishes and concerns – or for their family members who provide care at home”.

“Today, many people with dementia are still admitted to hospital and residential care settings during the terminal part of their illness, and often they don’t receive adequate palliative care services,” she says.

“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.”

Research reveals that 70 per cent of people would prefer to die at home if they were comfortable and well supported. Despite this, around 54 per cent of Australians die in hospitals, 32 per cent die in residential care facilities and only 14 per cent die at home. Currently, little is known about the place of death among people with dementia in Australia.

How to support this research via an online survey

Are you a family member, friend or relative of a person with dementia who 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.

If you are interested in participating and would like to know more, click here: http://sydney.edu.au/nursing/research/events.shtml

Fast facts:
• Dementia is Australia’s third leading cause of death, and responsible for a more than 15 per cent of the total disability burden in older Australians.
• The latest estimates indicate that 332,000 Australians are living with dementia, a figure expected to treble, reaching around 900,000 by 2050 (AIHW, 2014).
• Approximately 70 per cent of people with dementia are cared for in the community and estimates suggest that, in 2011, there were around 200,000 informal carers of people with dementia living in the community (AIHW, 2012).
• As symptoms become more severe and care needs become too great for family caregivers, friends or neighbours to manage at home, many people with dementia will move to a nursing home setting for end of life care.
• Recent reports by the Australian Institute of Health and Welfare (AIHW, 2012; AIHW, 2014) the NSW Agency for Clinical Innovation (ACI, 2013) and a Senate Inquiry on Palliative Care in Australia (Australian Government Senate, 2012) suggest that people with dementia do not have adequate access to appropriate end of life care.
• Little information is available concerning the place of death among people with dementia in Australia. Research on preferences for place of death consistently shows that dying at home is the main preference.
• Despite this, around 54 per cent of Australians die in hospitals, 32 per cent die in residential care facilities and only 14 per cent die at home. While dying in Australia has become institutionalised, there is growing awareness that greater priority should be given to improving end of life care for all older Australians living both at home and in residential care.

Media enquiries:

University of Sydney, Dan Gaffney, mobile 048 100 4782 email daniel.gaffney@sydney.edu.au
Southern Cross University, Brigid Veale, mobile 0439 680 748 email brigid.veale@scu.edu.au

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