Keeping it in the family
The great public health battle of the next 40 years will be fought in the home as much as in hospitals. But are we ready? Neil McMahon meets the people already on the front lines of the dementia crisis.
The great public health battle of the next 40 years will be fought in the home as much as in hospitals. But are we ready? Neil McMahon meets the people already on the front lines of the dementia crisis. JULIA Gillard has a plan when it comes to dementia, and it is generally agreed to be a good one, even if it does involve spending billions of dollars and is based on the need for widespread sacrifice. Families will be stretched and strained and lives will be upended - but the gamble is that this is a price most will willingly pay.The reward: you get to stay in your own home, even in the face of complicated medical disasters. Canberra will help you, most of the time. It's good for you, it would seem, and good for the government, because the grim facts when it comes to dementia are simple. The nation faces an epidemic, with 1 million of us predicted to be diagnosed with the disease by 2050, absent a medical breakthrough. Already the system barely copes. All those people will need to be cared for somewhere, and there are only so many nursing homes you can build.So, under an aged-care reform package unveiled last month and to be given formal flesh in Tuesday's budget, the Gillard government has made a virtue of necessity, funding a dramatic expansion of federal support for keeping dementia patients in their own homes. It's what most people want, the argument goes. And the fear of losing your home to cover the cost of entering an aged-care facility will be eased. As Gillard said when she announced the reforms: ''More people will get to keep their home and more people will get to stay in their home.''It's hard to argue with the concept, but what of the reality?Families that have already taken the decision not to place a loved one in a nursing home present questions that are both confronting and reassuring. In many ways, caring for a dementia patient at home can sound nigh on impossible, presenting emotional, physical, practical and financial challenges that seem overwhelming. But carers are also keen to remind us of benefits that outweigh all that. As difficult as it is, they say, they wouldn't have it any other way.Nathalie Brown made that decision four years ago, when her mother Carmen was diagnosed with Alzheimer's, the most common form of dementia.Brown, married with two children and with a busy professional life as a child behaviour consultant, nonetheless didn't think twice. Her widowed mother had moved from Britain to be with her. Then came the decline - the fading memory, the erratic behaviour, and then the realisation that this was a disease that would consume their lives for the indefinite future.Carmen, now 79, was a native of Spain. In Europe, her daughter says, families are less inclined to shuffle an aged relative into a home. ''I think it's part heritage. And I think it's part me,'' she says of her decision to keep her mother in the family home.''I just remember my mum working really hard throughout her life and giving so much ? It was never for herself. She was just a big giver. In a way I'm very cross that she's got Alzheimer's because I wanted her to enjoy her retirement years. To stay with me and just relax and take it easy.''That wasn't to be, and now Brown, 43, her husband Ian, 44, and their children Becky, 16, and Ian, 7, have adjusted to a difficult reality that tens of thousands of Australians will face in coming years. They sold their previous home to buy a single-level property to accommodate Carmen's lack of mobility.Existing government assistance packages provide them with 16 hours of in-home care a week - but they fork out close to an extra $4000 a month out of their own pockets for additional assistance, paying Spanish-speaking carers to come to their home daily. In all, they have carers on hand for about 50 hours a week.''It changes your life. It has a big impact on your life,'' Brown says. ''We are lucky in that we can afford to get the carers in but it also means we are both working very hard. I know I could stop work and care for her full-time. But I did that for two years and I still had my own passion and my own life to see out.''It's a balancing act, and on the face of it one that many people would consider too difficult. Dementia, the symptoms of which can take many forms, is uniquely challenging. The sufferer is often physically able, even while being in mental decline. Wandering away from home is a constant worry. Sufferers can become aggressive. Paranoid. Personality traits never seen before can emerge. Then comes the physical decline.As Brown describes it: ''At the beginning I thought, 'I just can't do this because she used to do really weird things, like throw out her dentures and I would spend six hours looking for them. Or I'd go into her room and it would smell and she would have put her faeces down the [heating] vent. I couldn't get cross with her, but I'd think, 'I don't think I can do this'. And then that sort of peters out and you get into the crying. You adjust to each level. You have to laugh a lot of it off. It's not mum doing that, it's the Alzheimer's.''The federal government's hope is that the thousands of families who will face such circumstances in coming years will be willing and able to deal with such confronting daily moments. And Maree McCabe, chief executive of the Victorian arm of Alzheimer's Australia, says the model of encouraging people to stay in the family home after a dementia diagnosis is based on frontline experience.''That's one of the things that comes out, [that people] want to stay at home as long as they possibly can, they want to be surrounded by their loved ones, their carers and family and friends,'' she says.''It depends on the type of dementia that people have and the way that it manifests. It's not all cut and dried. It really depends on the part of the brain that's been affected and the symptoms that arise from that. For some people, it's not a challenge to manage people at home. They get supported with their activities like showering and meals and those sort of things and they can manage really successfully.''THE Patsias family, of Mount Waverley, never had any doubt when patriarch Michael was diagnosed with dementia. He's now 76, and the diagnosis was 16 years ago, but he still lives at home with his wife, Katerina, and has the daily attention of his three daughters as well as outside carers, funded by a government package. He can no longer walk or speak. Yet his daughter, Carol Liavas, says the family is committed to keeping him at home until the end. ''Emotionally it's taken a huge toll on all of us. But I don't know how we would do it any other way now,'' she says.Liavas is a member of a consumer advisory council for Alzheimer's Australia, and says one of the biggest challenges for families deciding to keep a dementia patient at home is navigating the bewildering maze of services available. Often it is pure luck that you learn exactly what can be accessed. One of the selling points of the federal reform package is that such services will be streamlined, with a single access point for information.''I remember very early on mum was very frustrated with how many people were coming in and out of the house asking her questions,'' she says. ''Mum had no clue how the pieces of the puzzle all fitted together. And she was sick of answering the same questions over and over again to these strange people who she'd never see again.''When I look back I realise how completely out of our depth we were. You think things are really bad at the time and they just become so much worse.'' She says that despite the decision to keep her father at home, it is vital to have the discussion on home care versus a nursing home - because her own family avoided it.''We never had that debate. And I think wrongly. All of it really has to do with mum, that she wanted dad at home. If there was ever a problem she'd come to me and we'd just try to work through it. I think I just got on board, once I knew that's what her wish was. I took her to one beautiful aged-care facility and she just looked at me and wasn't forthcoming about it. And any mention of selling the family home distressed her. And I just realised, we can't even go there, we can't even talk about it. We've never had the family discussion.''It's a debate that can cripple family conversation, and family decision-making along with it. Relatives find themselves stressed, confused and sometimes in conflict over what step to take next. Sandra Hills, chief executive of the not-for-profit aged-care provider Benetas, says the nursing-home versus stay-at-home decision is never easy to make.''It's a very big decision. And many people think they can do it. Some people soldier on for a long time. A lot of people don't seek assistance. We all know people in our communities, our friends, our families and in our streets - sometimes it's five years or more before there's a diagnosis of dementia or some cognitive impairment. It has so many flow-on effects in terms of, 'Can I go to work? Can I leave my wife at home? Who's going to do the housework? Who's going to do the shopping?' A complete change of roles, relationships.''It's perhaps a sign of confusion in the community that Benetas has begun offering a consultation service to families to help them navigate the aged-care maze. For $540, the company now has a six-month liaison service, covering everything from advice on caring for sufferers in the home to financial and medical planning, all tailored to individual circumstances. ''We believe there is huge demand for this,'' Hills says.The fee does not necessarily come out of your own pocket - it can be covered under a government-funded aged-care package. ''We're not trying to rip people off,'' Hills says. ''We're a not-for-profit organisation and any money we make will go back to all the work we do.''Maree McCabe, who lost her own father to dementia a few years ago, says the decision choosing between home care and a nursing home can be shattering for families. ''Three months before he died we had to move him into care and it was heart wrenching. He didn't want to go.''However, she adds: ''For many people, going into residential aged care is the best thing.''In her father's case, he could get lonely at home. ''Many of [his friends] had died and those that were still alive, some of them found it too hard to be around him. For many people it's a very positive step. People shouldn't feel like they have to stay at home ? it's something they should have the choice about, when it works for them. We as families often feel like we've failed because our loved one has gone into care, which is not the case. They don't get all the things that a family would do for them, but in many ways it's a positive thing.''As the dementia epidemic unfolds, these decisions will become as much a part of family discussion as they are a matter of government policy. For Nathalie Brown, those discussions have long been a reality - even with her son, Ian, whose seven-year-old questions bring home just how confronting it can be for a family to take on the responsibility.''He went through a phase about a month ago of saying, 'I don't want you to get it mummy. Can you get a tattoo with our names on it because I don't want you ever to forget me'. He says, 'I don't want grandma to die, I don't want you to die, what's the point of living if we're all going to die'.''So we've done all the chats. I talk about invisible love, about how you'll always carry that person's love in your heart. I've explained that it's an illness of the brain where the brain just starts to forget everything. The kids are both brilliant with it. They know what makes her laugh. They'll do thumbs up and faces. If mum's a bit down they'll put on a show for her. She sees the kids and she's happy.'' A week in the life of the Patsias familyDEMENTIA sufferer Michael Patsias, 76, wife Katerina, 72, and daughter Dora, 38, live in the family home. Daughters Carol Liavas, 48 , and Despina, 49, live nearby and are heavily involved in the daily care plan. Michael has lost nearly all cognitive function and cannot walk.MONDAY TO FRIDAY8AM An outside carer, Ross from Rapid Care, arrives every weekday morning, along with Carol. Michael requires help to shower, shave, go to the toilet, eat breakfast and take his medication.9.30am Ross drives Michael to an aged-care facility in Ringwood that provides day care for out-patients.2.30pm Ross collects Michael from day-care and drives him home.3.30pm-6.30pm At home, Ross provides bathroom care and administers medication. Michael is served an early dinner.6.30pm Michael is helped to bed.EVERY WEDNESDAYKaterina utilises a weekly house-cleaning service, provided under Michael's aged-care package. Two people come to the house for 90 minutes a week.ONCE A WEEKMichael's care package allows him a weekly hour-long visit from a remedial masseuse.ONCE A FORTNIGHTThe couple has two-hours gardening service every two weeks, also covered by the care package.EQUIPMENTMichael's care package funds a hospital bed, a bed hoist, a lifting machine and a wheelchair.