The royal commission has been hearing this week about the struggles that carers face looking after their loved ones at home.
Carers revealed they face social isolation, financial hardship, difficulty accessing respite care, and a lack of support in general. Yet some said it was still a role they were happy to perform.
On Tuesday, Nicole Dunn told the royal commission that moving in with her grandmother at the age of only 32 to care for her was something she did with little thought as to how it would impact her own life.
“I don’t know whether I really considered my life choices, to be honest… because that was not what was important to me.
“What was important to me was providing care for someone else, particularly because I knew the time I had to do that would be limited.”
“If my social life was to be impacted, so be it. If work was impacted, so be it. Even if my own health was impacted, so be it,” she said.
When her grandmother passed away, Ms Dunn said it took some time for her to adjust.
“It took a while to recover. There was obviously a natural grieving process that you go through.”
“You somehow have to just get back to the normality of life, as if nothing happened. So it was difficult. It was emotionally quite difficult to do,” she said.
Ms Dunn said at times it was difficult to find support and that even just having “someone to talk to, some support as a carer” would have been helpful.
Yet she saw the experience of caring for her grandmother as a positive experience.
“There were a lot of benefits… It really brought my grandmother and I closer together in terms of our relationship, just the silly little things you do day to day that you get to see and you get to experience in caring for someone, and that’s… something I look back and I treasure.
“I’m really proud of being a carer for her, and it’s given me a different outlook on life, so I really appreciate the little things in life and I’m… very lucky that, at my age, I can really realise what’s truly important and it’s not the materialistic things, it’s the time that you have with people.”
She said having more support available for carers would relieve some of the “burden” carers carry.
“I spent so much time speaking to services and arranging services… because my grandmother was not aware of how to do that or what was available,” she said.
Doctor Lyn Phillipson said dementia-specific training for home-based carers would be helpful in many situations, and yet there is little available.
“We’ve recognised the complexities that are associated in providing good quality care for people with dementia and the fact that even health professionals and paid care workers really benefit from training around this role.
“But the Dementia Training and Study Program does focus on paid carers and on health professionals. It doesn’t include unpaid carers as one of the target audiences.”
Dr Phillipson said the National Dementia Support Program provides limited education for people with dementia and their carers, but it tends to target the beginning stage of dementia and the diagnosis. The training doesn’t “meet the needs” of carers as the person with dementia’s condition deteriorates.
“We have recognised the complexity of this care and invested a lot of money into a program that’s very needed for health professionals and formal paid carers, but haven’t… developed a similar program which recognises that informal and family carers are actually providing the vast majority of care for people with dementia who are living at home.”
Dr Phillipson said the in the transition to consumer-directed care there has been some loss of the focus on carers’ needs.
She said the ‘Carer Gateway’ has a “fatal flaw” in that there is not enough funding to provide respite services that could be helpful.
On Monday, Dorothy Holt told the royal commission about her experience caring for her mother in Mildura from 2004 until 2016.
When she tried to access respite care in Mildura in 2015, a shortage of respite beds meant none was available. She was told, “You can take it when it’s available but… unless somebody dies, you won’t get you any”.
However, when she moved to South Australia the situation was better, though not perfect.
Her mother did not have a good stay in one home – “it wasn’t a great experience” Ms Holt said, and another time she was told when she wanted a week of respite care, “You can have four weeks or nothing.”