Monday, 31 October 2011
On 13 October, the Thursday of the last parliamentary sitting week, 300 people marched on Parliament House to raise awareness of dementia, an increasing problem afflicting Australians. The number 300 is significant because there are now estimated to be some 300,000 people in Australia who have been diagnosed with dementia. That figure will rise to 600,000 by 2030 and is estimated to be at one million by 2050. There are 1,500 new cases diagnosed every week in Australia, and that will rise to 7½ thousand cases per week by the year 2050. This is an issue that needs the attention of the parliament, and I direct it to the Senate.
What is interesting is that, of those 300,000 people, some 16,000 are under the age of 65 years. What is also very interesting, and a matter which needs to be addressed with some degree of urgency by the policymakers, is the amount of research money that is being put into dementia in Australia. That figure, nationally, in the last financial year was a paltry $19 million. That is $19 million of funds, according to the NHMRC, allocated to dementia research. Let me put that into some perspective by referring to funding for research into other diseases of concern to the public in this country. For cancer, the figure invested was $144 million, for heart condition research it was $100 million and for diabetes it was $63 million. All of these are, of course, critically important areas of medical and related research, but they highlight that funding for dementia, at $19 million, is totally inadequate.
With an ageing population it is interesting to note that a person's risk of getting dementia doubles every five-year period after the age of 80. We are now enjoying increased longevity in this country. I read recently that one girl in four who is born this year will reach the age of 100 years. So we know we are an ageing population.
I wish to speak of one carer—he is one of the 1.2 million carers of people with dementia in this country—a gentleman who I met recently in my office in Perth, a Mr Tony Ramshaw. His wife got dementia at the age of 54 years. Whilst I do not know his age or hers, I would judge him to be in his early 70s. He told me that to spend more time with his wife and enable her to remain at home longer he gave up his employment. He said to me that not only had this been a very enriching experience for him but, we agreed, it had probably prolonged both her life and her enjoyment of life through to the stage where he could care for her no more.
I do want to come back to the question of carers in a few moments. There are 300,000 people diagnosed with dementia now. The other interesting statistic in relation to this is that, of the 200,000 people in nursing homes in Australia, slightly over 100,000 have dementia. In other words, a third of all people diagnosed with dementia in this country are in nursing homes, and they constitute half of that group. My mother, who turns 96 years of age tomorrow, is in a nursing home. I regret that at 96, after a very full life and after becoming a stroke victim, she is getting to the stage where, unfortunately, she has been diagnosed in the same way. I have plenty of opportunity, on the occasions when I am at home, to visit her and also to observe people declining who I have known in that nursing home for some period of time.
The cost to the community is extraordinary given the fact that half of all the beds in our nursing homes are occupied by dementia sufferers. What do we do about it? Well, the issue goes even further. Having mentioned the 1.3 million carers, it was interesting to view some statistics recently that some 350,000 of those carers are under the age of 25 years, and they represent five per cent of all people under the age of 25 years. In other words, five per cent of all people under the age of 25 years in this country are nominated as carers. Very often they are carers for parents, or perhaps for children, family members or friends. What a great contribution they make. I saw an article and a program recently about a nine-year-old girl who was the primary carer for her mother.
The other interesting statistic—particularly given my interest in rural Australia—is from recent surveys that were publicised in the press in only the last few days. These surveys indicate, as you would expect, that people in rural and regional areas find it far more difficult as carers than those in metropolitan areas, simply because of their lack of access to medical services, and particularly specialist services. So whilst we consider the future challenges we have to look at with regard to dementia—of which Alzheimer's disease is only one type—we must not forget the young carers and we must not forget the challenges associated with people in non-metropolitan areas.
What is available for carers? Whilst the list is impressive, the funding in itself is not. There is direct financial support for carers. There is support for those who are unable to care at home full-time for their family member with dementia. There are aged-care packages within the community. There is even an Extended Aged Care at Home program. Then there is the question of residential respite, which is a process whereby the people with dementia can be placed in a residence for a period of time so that the carers themselves are able to recover. If we do not deal with this issue sufficiently we will find ourselves in a circumstance where the carers themselves are in need of care. I have recently seen estimates that, if one were to apply some economic value to carers in the community, it would be found that they are saving the community, saving the government and saving the taxpayer some $5½ billion as a result of their efforts. One would think in that circumstance that they should in some way be rewarded and recognised. So at a time when budgets are tight, at a time when there is competition for the ever-decreasing dollar, the question is: what are we going to do for dementia in two areas—that of the carers and that of research? The figures support very strongly that for every 12 months we can delay the onset of dementia and for every 12 months we can delay the person needing to go into care the savings to the community are enormous and the social savings to that individual and to their family are enormous.
I want to conclude with some disturbing figures you hear when you start to talk to the wider community about dementia. Unfortunately we find ourselves in the circumstance where, through ignorance—I am sure it is through ignorance—dementia is a disease which is shunned and not spoken about to any great extent. Researchers report that 56 per cent of carers say that people with dementia are in fact discriminated against in our community. It is the third leading cause of death in Australia and yet most people do not recognise it as a terminal illness. The surveys suggest that two-thirds of Australians are scared of developing dementia, a fear which is second only to developing cancer. A third of respondents in a recent survey found people with dementia irritating and 11 per cent said that they would avoid spending time with people who had dementia. In fact, worst of all was that 60 per cent anticipated that if they were diagnosed with dementia they would experience feelings of shame. We are an ageing population. There would not be a family in this country not touched in some way by the dementia of a relative or not linked to a carer. So in speaking this evening I want to congratulate those 300 who marched on 13 October and commend this as an issue of concern to the Senate.