It's a challenge more difficult than most 30-somethings would want or expect, but when her grandmother was diagnosed with dementia Megan Towns knew she had to do whatever it took to help. She opened both her heart and her home, moving her relative from Queensland to Sydney to take care of her.
Friends thought she was mad. “People were looking at me saying, ‘What are you doing? You need to think about a nursing home’,” says the 31-year-old from Sydney’s south-west. “But if I had done that, I don’t think she’d be here right now. You do what you have to do.”
A year on, Towns has no regrets, but is much wiser about the challenges of caring for a loved one in these most confronting of circumstances. Like a growing number of families facing a dementia diagnosis amid a spreading epidemic of the disease, she has also found herself facing a challenge that can be as overwhelming in its way as the disease itself: navigating an aged-care system so complex and Byzantine that it leaves even industry experts struggling to understand and explain it.
“What we've created is this huge, complex system that confuses the living daylights out of everybody. Even specialists struggle, people who know what they’re doing,” says Ron Carroll, who runs a placement service that advises people on finding a nursing home for a loved one.
As of July 1, it will get even more complex, as aged-care reforms, announced by the Gillard government two years ago and carried through by the Coalition, are introduced. They come with a promise of greater transparency, flexibility and control for the consumer trying to settle on the best options for care – but they change the rules, and will leave some people at a financial disadvantage. They deliver greater choice – a plus – which brings with it the potential for greater confusion – a minus. [See breakout box] And while no one questions that reform is essential, some worry that good elements of the existing system might be lost as a new and far-reaching bureaucratic maze is put in place.
As the chief executive of Alzheimer’s Australia, Glenn Rees and his organisation broadly support the thrust of the reforms. “Like everybody, we’ve got issues but we thought this was the one and only bus we were likely to catch.” The proof will be in the implementation, he says, but notes: “Our concern is that it will become a new government monolith and it will treat consumers as if they all have the same issues and problems. About 60 per cent of people with dementia in the community don't have a carer, they live alone. A lot of people don’t have support. It’s not going far enough in recognising the different needs of different consumers.”
BUREAUCRACIES recognise numbers and computer codes and budget bottom lines. Diseases take their toll on individuals and, in the case of dementia, recognise no boundaries, physical, financial or otherwise. There is no cure and its predicted spread is terrifying: one million Australians are expected to be living with the disease by 2050. As a condition it comes with uniquely cruel complications – mental ravages accompanied by unpredictable physical problems, and with no promise of a swift ending.
For Towns, the impact of her grandmother’s diagnosis has been dramatic. She has moved from an apartment to a house to accommodate her, and has changed jobs to be closer to home. And she has been driven to distraction by the complexities of the aged-care system.
“For four to six months I was just going around in circles, and that was the most stressful point for me. You're trying to get help, you're trying to do the right thing and people just flick you on to the next person.”
For a a time she was paying for professional carers to come to the house to help out of her own pocket, before finally having a government assessment team visit and approve subsidised care. “It’s a pain and they make you jump through hoops to get it done,” she says. “Trying to get the ball rolling is the hardest part.”
Finding out the kinds of assistance available is one of the challenges of dealing with a system that commonly remains a mystery to most of us until the moment we need it. Ian Yates, who heads the national Council on the Ageing advocacy body, says despite the publicity when they were announced in 2012, most people are likely to be unaware major reforms are about to kick in. “I don’t there’s a huge amount of awareness … aged-care tends not to get the same kind of promotion as other areas. And people don’t tend to look out for it until they need it, which is one of the problems with aged care.”
Alex Reed started a placement service in Sydney after dealing with her mother’s dementia diagnosis and having her placed in care in Britain. Though the systems are different, the emotional toll is the same. “The process of that – the confrontation of going into a home and choosing where somebody else will end their days, making that decision on someone else’s behalf, then confronting the finances, dealing with the system and getting approved, on top of all the emotional side of it – it’s such a minefield.”
Reed found more often than not people are engaging her service in a crisis.
“There’s often an event that’s dictated the need to move into care,” Reed says. “And people have no idea how much it costs. When you start talking the figures – the $300,000-$400,000 plus – I find a lot of people shut down. I have to have the conversation two or three different ways before we start to make progress. You find there’s a bit of anger there as well, because people are so caught up with the emotion and then face paying for the type of care they want. People ask ‘Why isn’t it available, why does it cost so much?’.”
It’s not uncommon for people to make decisions in such a rush that regrets follow. “After families have been through that traumatic time – that sense of drowning – then they find they haven’t made the right decisions financially.”
Glenn Rees says in an ideal world, we would plan ahead for our aged-care needs. That rarely happens, and the “simply bewildering” nature of arranging and paying for care means poor decisions are sometimes made. “Choice can sometimes be a bad thing,” he says. His advice: “Take your time. So often people leave these decisions to the last moment, which is a problem.”
Financial adviser Val Nigol, who has written a book to guide people through the system, concurs people need to take more time on what will be among the biggest financial and emotional decisions of their lives. Good advice is essential, lest crucial questions – such as whether to sell the family home to fund care, for example – are faced without adequate consideration. “Often a non-specialist [adviser] will say, ‘You have to sell your house’, which is wrong, you don’t necessarily have to. Selling your house can knock you out of the age pension”, which has a flow-on affect when income and assets tests are applied. This is crucial, with a key aspect of the reforms being an expectation that people deemed able to afford to pay more will now do so.
Ian Yates, who sits on the Aged Care Financing Authority which advises the government on funding and financing issues, says monitoring access to care will be watched carefully. “We will be keeping a very close eye on whether there are any negative impacts. I don't think it will have a major impact on access but every major reform has some unintended consequences. There will be some ructions – ‘How come we have to pay?’ from some people.”
For people like Towns, these are decisions and issues she is yet to face, but she knows they will inevitably come. For now, she hopes to keep her grandmother at home for as long as she can, using in-home care to keep the nursing home decision at bay. Even that comes with its challenges. Like many dementia sufferers, her grandmother struggles with awareness of her disease and resisted the need for help. “I had to put my foot down and say, ‘You either need to help me when it comes to this, otherwise we have to think about a nursing home’. She’d push against me. Some days it’s a struggle. It can become exhausting.”
She is also planning ahead. “I’ve started to do a little bit of research [on nursing homes]. I speak to [her grandmother’s] financial adviser to make sure she is a good position if that does happen. I’ve heard so many stories about horrible nursing homes and it breaks my heart. I don’t want to be that person who puts her into one and something terrible happens.”
CHANGES AT A GLANCE
- Anyone already in the system before July 1 can continue with their current arrangements, or choose to move to the new system. If you were in an aged care facility before July 1 but leave the system for 28 days or more, you will be subject to the new rules.
- The reforms are aimed at helping people stay in their homes longer, as well as shifting to a greater emphasis on user pays, with a new income and assets test used to assess how much people will pay for accommodation or in-home care. An online hub, www.myagedcare.gov.au, has been created to help people navigate the system and manage their care plan.
- Revised income and assets test will affect how selling or keeping the family home impacts on the amount people pay for care. The reforms also include annual and lifetime caps on the amount people will be asked to contribute to their own care.
- Nursing homes will have to be more transparent about pricing and the specific services they offer. They can set their own prices, but must advertise them in advance. Any facility charging more than $550,000 as a lump sum for a place in nursing home will need approval from the the Aged Care Pricing Commissioner.
- New residents can pay their accommodation cost as a lump sum refundable deposit, as a periodic payment, or a combination of both. Once you enter care, you have 28 days to decide how you will pay.
