Monday, 24 June 2013
Health and Ageing Committee; Report and Reference to Federation Chamber
On behalf of the Standing Committee on Health and Ageing, I present the committee's report entitled Thinking ahead: Report on the inquiry into dementia: early diagnosis and intervention, together with the minutes of the proceedings. The inquiry was referred to the committee by the Minister for Ageing on 20 March 2012. The prevalence of dementia in Australia is predicted to triple in less than 40 years. That means that by 2050 there will be more than 900,000 Australians living with dementia. The challenge for Australia is how to develop a robust system of services to meet the ongoing needs of people living with dementia as well as the needs of families and carers.
In its inquiry, the committee considered the far-reaching benefits of early diagnosis and intervention on dementia. Early diagnosis allows people to access appropriate treatments at the earlier opportunity. It allows them to make informed choices about their current and future needs. It also allows them to make important decisions about legal and financial affairs. Despite these obvious benefits, the committee heard that about two-thirds of people living with dementia do not receive a diagnosis. People who are diagnosed wait an average of three years from the first symptoms to diagnosis.
One of the major barriers achieving early diagnosis is the lack of awareness. Myths about dementia remain widespread. Many people believe that dementia is an inevitable part of ageing and that nothing can be done about it. Others are too afraid to seek an assessment. They would simply rather not know. Improving our understanding of dementia is the key to banishing these myths and tackling stigma. Ideally, people should seek professional assessment as soon as they have concerns. To address stigma and encourage people to seek early diagnosis, the committee has called for a comprehensive national awareness campaign on dementia.
As I mentioned, a benefit of early diagnosis is early intervention, but the committee heard how people still face challenges after diagnosis is made. They do not know what services they can access and how to go about it. In short, there is a lack of coordination and no clear service pathway for people post-diagnosis. To address this, the committee recommends that a case manager or dementia linked worked help connect people to appropriate services and support. Medicare Locals could be used to coordinate local care pathways and facilitate a multidisciplinary approach to diagnosis, treatment and support.
Looking to the future, the ultimate goal in Australia and around the world would be to achieve a cure for dementia. Clearly we are not there yet but there are things that people can do now that exports say may reduce the risk of developing dementia or delay its onset,. A healthy lifestyle is crucial, including a good diet, plenty of exercise and continued social activity and engagement. However, more research is needed. The committee encourages ongoing support for dementia research and calls for an increased effort to determine the influence of psychosocial interventions on brain health.
The committee heard that there is a call to create dementia friendly communities in Australia. These communities would support a holistic approach to dementia care. This involves educating all sectors of the community, not just health and care sectors, to understand and accommodate the needs of people with dementia and their carers.
Dementia-friendly communities would need support from our shops, banks, transport services, police and emergency services, as well as from town planners—and that is just to name a few. The community supports moves towards a dementia-friendly society. Before finishing, it would be very remiss of me not to mention the Living Longer, Living Better aged-care reform package of $3.7 billion over five years. This includes a significant investment in initiatives to tackle dementia. I am confident that many of the issues raised with the committee will be addressed through this package of reforms as they are implemented over the next few years.
On behalf of the committee, I would like to offer my thanks to all those who contributed to the inquiry. In particular, I acknowledge the contribution of the people with dementia and their carers who generously shared their stories with us. I would also like to thank my committee colleagues, particularly the previous chair, Steve Georganas, and the deputy chair, Steve Irons, for their participation in and commitment to this inquiry. In addition to that, I thank the wonderful secretariat for all the work they have put into putting together such a great report as I have tabled here today.
I rise to join with the chair of the Standing Committee on Health and Ageing in speaking on the tabling of its Thinking ahead report. This is the ninth report of an inquiry by the House of Representatives Standing Committee on Health and Ageing to be tabled in this 43rd Parliament and potentially this is the last opportunity for members of the committee to speak on matters of the committee in this term unless the report is referred to the Federation Chamber, which I believe, as the chair has told me, is going to happen but I see the chair has left the chamber so we will have to wait and see if she does come back to refer it to the Federation Chamber.
As we all know, the committee work of parliament is extremely important and we need to make sure, in the processes we take through these reports and recommendations, that all those who participate are thanked, so I would like to thank all the members of the public who have taken part in these inquiries, particularly this inquiry, and for the time they invest in the process. Sometimes the testimonies they make take great personal courage, time and energy for them to participate. I would also like to thank the secretariat, whose members I see in the chamber, for their work. This was an extensive report and it took a lot of time to take evidence around Australia and make inquiries, so their effort towards the tabling of this report and the writing of this report is fantastic and I would like to thank them for all their efforts along with the rest of the committee, the chair and the previous chair as well, the member for Hindmarsh.
I now return to the report that has been tabled today, which is a worthwhile report that this committee has been undertaking since 20 March 2012. It has been a very comprehensive inquiry process with 17 public hearings right across the major population centres of the country and these hearings were attended by hundreds of people who gave evidence in person as well as the receipt of 119 written submissions. Some of the highlights of the inquiry for me arose in Adelaide and in Parkes and also in Swan, at Curtin University. I was extremely interested in the evidence given by Professor Ralph Martins from Edith Cowan University and I will read into the Hansard parts of his opening statement. It begins:
My focus for the last few years has been on trying to understand what causes Alzheimer's disease. More recently, we have been focusing our attention on two major areas. One is early diagnosis and the other is lifestyle factors that can impact on the disease and how we can utilise that information to prevent Alzheimer's disease or significantly delay it.
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Six years ago there was an initiative led by the CSIRO where they asked for expressions of interest to look at setting up a cohort in Australia to try to understand ways in which we can diagnose the disease early. This is now known as the Australian Imaging, Biomarkers and Lifestyle Flagship Study of Ageing. … Collectively we recruited 1,100 people for the study and we have been following them for the last six years. The large part are healthy controls—700 of them—of whom half are memory complainers. We also have a smaller proportion who we call 'mildly cognitively impaired'. So they are not demented but they are significantly deficient in a couple of memory tasks.
And then we have people with early-stage Alzheimer's. We have followed them for the last six years. The process involves brain imaging; the taking of blood for blood biomarkers; looking at lifestyle factors; and, obviously, extensive clinical overview and investigation, including neuropsychological assessments.
There are only two studies of this kind in the world. One is here in Australia and the other is in the United States. As to funding, they have recruited 800 people in the US for a budget of $60 million; we have done 1,100 for a budget of around $8 million. The difference between their cohort and ours is that we have imaged the brain of a substantially larger number of people. Also, they have paid no attention to lifestyle factors, whereas that has been one of our major objectives. So we are unique in that regard.
In that short period of time we have already identified a panel of blood bio-markers that can reflect changes in the brain. We are now hitting an accuracy of 85 per cent and that is almost as good as clinical evaluation. We obviously want to get it better. We have led the world in imaging the brain for early diagnosis and it has been clearly shown—Australians are doing this—that you can pick up the disease at least 15 or even 20 years before the onset of symptoms. I think this early diagnosis is critical. We are now trying to look at ways in which we can measure those changes in the blood that will allow us to predict people with Alzheimer's. We are also doing something that is highly innovative and I can see that it is the way forward. We can now see changes in the eye. The amyloid deposits in the brain can be seen in the eye. We are probably the first in the world with a partner in the US to look at that.
I look forward to continuing this speech and commend this report to the House.