Last week I went to Parliament for the launch of a major study called the Economic Cost of Dementia in Australia. It was commissioned by Alzheimer’s Australia, and carried out by NATSEM, the social and economic modelling group at the University of Canberra. Their work is always accurate and thoughtful, and the presentation was excellent. Since I have a couple of roles with Alzheimer’s, and am also a carer, I had an immediate interest in what was being put forward to us.
I’ve read the report and have no major criticisms. I am always a bit suspicious of talk about ‘economic costs’, for example those with respect to traffic congestion. But so far as I could see, the authors had done their work well. They distinguish between direct and indirect costs. All health issues involve direct costs — doctors, specialists, hospital, pharmacy, ambulance and so on. The report sees direct cost in this case as ‘actual out-of-pocket cost, which excludes subsidies and support from government’. Indirect costs include loss of income both of those with the disease and of those who care for them. Two-thirds of the carers are women, aged 65 or more, and three quarters are either partners or children.
I’ve written about Alzheimer’s before (here, and for example, and here), and I won’t rehash any of that. The new report tells us that dementia is on the rise as longevity increases. Today, or at least early in 2017, the estimate for the total number (an estimate, because some people with dementia are not known to doctors or hospitals) is 413,105. Some 26,000 of them are defined as having ‘ early-onset dementia’, meaning that they have been visited by the disease before the age of 65. Some have been afflicted in their thirties. To the sufferers we add another 291,163 people who act as carers, about a quarter formally, as in nursing homes, three quarters ‘informally’ at home. I am one of the latter group. That’s about 700,000 people, getting on for three per cent of the nation’s population.
Dementia is a cruel disease. There is no cure. The best you can hope for is postponement. I have come to know just how diabolical ‘short-term memory loss’ can be. People will tell you, ‘Oh, but I have that a lot’. But they don’t. They’ve forgotten something, a name, a date, a factoid of some kind. But they will retrieve it fairly quickly. For people living with dementia that name, factoid or date is gone. Think how we depend on high-technology machines. If you are saddled with short-term memory loss or ‘mild cognitive impairment’ you will not be able to use the new smart phone, because you will never be able to master it. No matter how many times you are shown what to do, the demonstration will escape your memory quickly. You want to get some money from the ATM? A person living with dementia will have forgotten the PIN number. They will know the familiar walks around the suburb, but put them in an unfamiliar street, even one close to home, and they will be lost, and helpless. Yet they know where home is, or they think they do. My father, here on a visit, wandered off, sure he knew where he was going. He did know, perfectly well, but he was remembering the Canberra of 1929, a couple of kilometres from where we lived. I guessed, and found him near where he had courted my mother.
Long-term memories are pretty safe, as with Dad. People with dementia can recall many, quite detailed, memories of their childhood and young adulthood, because the memories have been rehearsed so much over the years. But what we did yesterday, in any detail, will pass away from the mind. What we did two days ago is gone, unless it is brought back for discussion, and even then much of it will have disappeared. The person being cared for is still the same person, struggling with a chaotic mental fog that affects communication. A sentence will start, falter and stop. They feel guilty, angry, helpless, despondent, fearful that their friends will avoid them. At one point they will tell no one what is the matter. At another time they can hardly stop telling people. Most friends and near family know something is the matter before there is any diagnosis. A proper diagnosis may take a year or more, and it can be a terrible blow.
For the carer, there is a lot to learn, about the disease and its various manifestations. It is essential to have a new peer group of people like yourself, and Alzheimer’s Australia provides that through a program called Learning to Live with Memory Loss, which is a boon to both the carer and the person being cared for. I have an old friend whose wife has gone through the disease and is now in care. He has been a great help to me. Being a carer is not a 24/7 occupation, but if you become one you will need to be ready 24/7 for the next discovery of the way the disease works, ready to develop a mechanism for dealing with it, and ready to put it into practice. You will learn to have a quick smile, to love with all your heart, and to wash away the felt guilt and unhappiness of the person you are caring for with all your resources. He or she has done nothing wrong. Rather, they have been given a great load to carry, and they often despair.
I’ve gone into some detail here because those outside the dementia world have little idea of what it is like, every day, to be in such a relationship. NATSEM’s report puts the annual costs of dementia at $14.67 billion, and predicts a rise to $36.85 billion in forty years’ time. The annual costs today represent a bit less than the amount the Commonwealth pays the States and Territories to run all the hospitals and related services. And if we could reduce the incidence of dementia, through better health education, earlier diagnosis, and encouraging people to lead healthier lifestyles, we might reduce those costs, and postpone the evil hour. And we should.
For in fact all the known lifestyle hazards will lead to a greater risk of encountering dementia in later life. Being overweight or obese in mid-life, being a drinker or a smoker, being someone who has little social interaction, having a sedentary lifestyle — all these factors point to dementia as well as all to the other illnesses that these habits generate.
What is needed is some kind of national approach to dealing with dementia. There is one. It is called The National Framework for Action on Dementia 2015-2019, and it was signed in 2015 by all Australian Governments. Where is it to fit with all the other health priorities? I shake my head at the problems facing the Federal Government. There is a body called The Parliamentary Friends of Dementia, which has co-convenors drawn from the Coalition and the Labor Parties. Both spoke at the launch ably and with passion. Each recognises how difficult it all is. Every day there are new appeals, claims and demands for more money for a new health issue.
And last week we saw just how difficult it is for the parties to agree on anything. The Government has to get the budget into balance in the foreseeable future. Almost two thirds of the Federal Budget goes on health, education and social welfare. The notion that all the needs can be met from the fat cats in Defence by getting rid of the toys for boys is just ludicrous. Defence is a small part of the national budget. The parties agreed that cuts had to be made, but not those proposed by the Government. So the bill failed. No one seems prepared to consider cuts for any program. I hope that some of the younger MPs and Senators are noting that if you want to reduce public spending, it’s better not to have started some programs at all.
Alzheimer’s is a national problem. My family has been good at looking after its own without seeking assistance, and since my grandfathers were a miner and and railways blacksmith, that was done on small incomes indeed. I do not seek help, either financially or in any other way, and we are not in any significant way part of the ‘cost’ the report draws attention to. But there are a lot out there who have no strong family network, and no other support. They are the ones who need help. I hope that somewhere, sometime soon, there will be recognition of the sheer scale of the problem of dementia. Paradoxically, the longer we live the more likely we are to succumb to it.