More than seven in 10 female and six in 10 male carers surveyed in the Australian Institute of Health and Welfare’s (AIHW) recent Living with Dementia Survey report feeling overwhelmed by their caring responsibilities, with nearly half saying some family relationships had deteriorated since they began caring. This highlights the urgent need to recognise carers this National Carers Week (11-17 October).
The Living with Dementia survey also revealed that more than eight in 10 participating carers identified as the primary carer of someone living with dementia, with around half providing at least 40 hours of care every week. Almost one third spent 70 or more hours each week caring for someone living with dementia.
Dementia Australia Chief Executive Officer Professor Tanya Buchanan said the findings show that while caring can be rewarding, it can also bring its challenges, and it reinforces the need to make sure carers are receiving the support they need.
“With so many Australians involved in caring, it is vital that there are systems in place to provide adequate support to carers,” Professor Buchanan said.
“Without support, carers can experience burnout and reach crisis points, which has flow on effects for people living with dementia. It increases the risk of unplanned hospitalisation or premature entry to residential care, which in turn puts more strain on individuals as well as the health and aged care systems.
“Respite care is one way we can support carers and help people living with dementia remain in their homes and communities for longer. But carers repeatedly tell us they are struggling to access the respite they need, which is why we are continuing to call for a national independent review of respite services.”
The Living with Dementia Survey also found that almost half of carers reported encountering complicated application processes for services and support, and more than one in three said there was a lack of available services in their local area.
“These findings echo what we have heard from people living with dementia and their carers for a long time – navigating and understanding the services and supports after a diagnosis of dementia can be extremely challenging,” said Professor Buchanan.
“The Living with Dementia Survey further found that while three in five people received information about available services soon after diagnosis, only two in five found it easy or very easy to find, apply for and book support services. This highlights the gap between receiving information and successfully navigating the system.
“This is why we want to see the implementation of a National Dementia Care Navigators Network to give people living with dementia and their families one point of contact after a diagnosis to help guide them through the process to access the right supports and services available to them.”
Dementia Australia Dementia Advocate Kristin Hughes, who cares for her husband Grant who lives with young onset dementia, said they experienced difficulties in navigating supports.
“We applied for support services and for some reason our ID wasn’t accepted, so we had to revisit the process all over again,” Kristin said.
“Nobody picked up that information and the file was closed. Referrals were also difficult and we felt like we were on the roundabout of support services. We eventually got a support package, but it’s been a long process of figuring out the system and finding the right support coordinator for Grant.
“We received support through Dementia Australia – we had monthly counselling sessions and took part in the Young Onset Dementia Day Course, which helped me and my family understand what Grant was going through.
“Things need to change so people can access the right support at the right time; I don’t want to continue to see others going through what we experienced.”
National Carers Week runs from the 11-17 October with the theme ‘Care for a carer: Making carers visible’. The week is the perfect time to remind carers of people living with all forms of dementia that Dementia Australia is here for them. The best place to start is by contacting the National Dementia Helpline anytime on 1800 100 500 or by visiting dementia.org.au.
More details on the Australian Institute of Health and Welfare’s Living with dementia survey can be found on the institute’s website.
