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Wednesday, 26 June 2013
Page: 7235

Mr IRONS (Swan) (16:38): The report Thinking ahead: report on the inquiry into dementia: early diagnosis and intervention is the culmination of 15 months work by the House of Representatives Standing Committee on Health and Ageing. We have just heard from the previous chair, the member for Hindmarsh. I thank him as well as the chair and the other committee members who worked on this report and who have helped make sure that this was a memorable report. It is a report which I think will go a long way towards assisting those who suffer the symptoms of early onset Alzheimer's.

This is the ninth report by the House of Representatives Standing Committee on Health and Ageing to be tabled in this 43rd Parliament. As this will be the final opportunity to speak on matters pertaining to that committee in the 43rd Parliament, I will, before moving on to the body of the report, make a general point regarding the status of those reports.

Members would be aware that one of the key roles of committees is not only to investigate and report on matters but also to put recommendations to the government of the day. It is the duty of the government of the day to provide a response to reports that contain recommendations within a six-month time frame. Of the nine inquiry reports handed down by the health and ageing committee during the 43rd Parliament, this is the seventh that requires a government response to its recommendations. However, unfortunately, to date the government has not responded to any of these reports tabled by the committee over the last three years. Three of these reports in particular are well beyond the six-month time frame, with the youth suicide report the most outstanding. That was a report that I initiated and it was tabled on 4 July 2011. Having taken a particular interest in the youth suicide report on behalf of the youth suicide charity Youth Focus, in my electorate of Swan, I am particularly keen to see these recommendations considered and responded to. A two-year delay is not good enough.

I am, as I know the member for Shortland is, a supporter of the committee system operated by the parliament. Since 2010, members of the health and ageing committee have completed reports containing 107 recommendations to the government. These reports include ones on early intervention programs aimed at preventing youth suicide, registration processes and support for overseas trained doctors, a round table on polio and postpolio syndrome, adhesive arachnoiditis, health issues across international borders, adult dental services and, today, early diagnosis and intervention in dementia. As I often mention when we table these reports, members of the public invest their time and themselves in the process and sometimes the testimonies take great personal courage. These people deserve prompt responses from the government of the day to the effort they have made to contribute to these reports.

As a deputy chair I receive many emails and calls from participants, particularly in relation to the overseas trained doctors inquiry, the arachnoiditis round table report and the youth suicide report, inquiring as to when the government will respond. I am sure that the chair receives these phone calls also; during discussion with her, she has also indicated her disappointment at the lack of response by the government of the day. I am sure the chair shares my frustration. I ask that she do all she can to secure responses from the government to the outstanding inquiries and reports before this parliament ends.

One of the great elements of these committees is that much of the work that is conducted is conducted in a bipartisan spirit, and I know that the member for Shortland, who is the chair, and all the members of the committee are concerned only for the work and the recommendations this committee has produced. I understand the need for the government to thoroughly consider these reports, but the government should really be doing better and I want to take this opportunity today to publicly state my concern in the House.

Having done that, I now turn to the report before the House—the report on dementia. This report has 17 recommendations for consideration by the government and I can say at the outset that I was particularly pleased to focus on this area, given my interest in the aged-care system in general. It is fair to say that many of the issues around dementia do feed into the aged-care system eventually. I have significant aged-care facilities in my electorate of Swan and have held many events there over previous years around the subject of the aged-care crisis.

This issue, once again, has the implications of a major problem which I do not believe has been adequately addressed by the government in the parliament. As the chair said, Australia's population is ageing, and over the next 20 years the number of people with dementia is predicted to more than double. Most members know someone who has suffered or is suffering from dementia. My mother, as we started work on this report, was placed in a dementia ward in Croydon in Victoria and is being very well looked after in that facility—but, as I said, this is an affliction or condition that many people are affected by, and many people in this place would know someone who has been affected by dementia.

To give some idea of the extent of the issue, it is estimated by Deloitte Access Economics that there were 266,574 people with dementia in 2011 and, assuming no change in the medications available to treat dementia, this number is projected to increase to 553,285 people by 2030 and almost 1,000,000 by 2050. So we need to do two things: we need to invest in the medical sciences, to give the scientists the best chance of finding ways to delay the onset of this disease and, ultimately, to prevent it entirely—and in my speech yesterday I spoke about the work of Professor Martins from Edith Cowan University in Perth—and we need to plan to manage this disease into the future.

That is what this inquiry was all about. The terms of reference for the inquiry asked the committee to inquire into the early diagnosis and intervention aspects of dementia, with a particular focus on how that can:

improve quality of life and assist people with dementia to remain independent for as long as possible;

increase opportunities for continued social engagement and community participation for people with dementia;

help people with dementia and their carers to plan for their futures, including organising financial and legal affairs and preparing for longer-term or more intensive care requirements; and

how best to deliver awareness and communication on dementia and dementia-related services into the community.

In response, the committee has endorsed 17 recommendations, and I want to go into some more detail on the issues of awareness and postdiagnosis in particular here today.

It is obviously extremely important, if we are going to secure more early diagnoses, that people are made aware of the signs at the earliest stage. It is not just the awareness of friends and family that we need to focus on. One of the biggest problems and barriers to early intervention is that patients do not want to admit that they have a problem in the first instance and they avoid seeing their GP. That is obviously an extremely difficult time for anyone with dementia, and I am sure that members will have stories of people they know who are struggling with and, in some cases, resisting the realisation that they may have some form of dementia. This is perpetuated by the misconception that there is nothing that can be done to delay the onset or to assist with the symptoms of dementia, but this is not the case.

Although the report did not go deep into much of the science surrounding the benefits of early diagnosis, it was generally agreed at a broad level that early intervention had a number of clinical benefits in addition to non-clinical benefits. The Australian General Practice Network gave evidence that these benefits included the potential to:

treat the reversible causes of dementia

help slow the progression of dementia through pharmaceutical and lifestyle interventions

support symptom management through pharmaceutical and lifestyle interventions (many of which are likely to be more effective earlier in the course of disease progression) and minimise the impact of symptoms, for example through the establishment of routines that can help patients and families manage declining cognitive function.

If we can get the message out that treatment and early intervention makes a big difference in terms of clinical outcomes to the quality of life, then this might make it significantly easier for patients to come forward. But we also need to factor GPs into this equation, as evidence given to the committee suggested that some GPs are unaware of some of the clinical benefits of early intervention. Mrs Fiona Young, a clinical nurse consultant in Tasmania, said in her evidence:

For health professionals there needs to be awareness too. We cannot assume that because people are health professionals they have a good understanding of dementia because it is a specialised area.

Mr Jack Sach of Alzheimer's Australia Victoria told the committee that dementia was often not well recognised by GPs due to a lack of training, saying:

Many GPs are not well trained in the application of cognitive screens such as the mini-mental and so forth. Many GPs have difficulty just keeping pace with the latest science in this area, which is very, very rapid at the moment. Some GPs may be reluctant to refer to specialists, hence there is misdiagnosis occurring. Many GPs do not fully appreciate the services that are available and therefore do not refer on.

On the question of awareness, a key part of early diagnosis, the committee focused its recommendations not only on the need for the Department of Health and Ageing to engage in a general awareness campaign but also on the need for the development of a national evidence-based dementia training program for GPs with an emphasis on early diagnosis.

The second set of issues considered in this report that I wanted to make a comment on is around the question of postdiagnosis. One theme that came through strongly was that doctors tend to provide much of the information to the patients on management of dementia at the time of diagnosis. This is a difficult time for a couple of reasons, the first being that most patients are obviously fairly distressed at receiving the news and are not in the best position to be thinking abut treatment options.

The second reason is explained in the CDAMS submission: with earlier diagnosis, clients and families are often not ready for or in need of services at the point of diagnosis. They tend to manage initially and, apart from some contact with their GP, are not connected to the service system. Information, provided at the time of diagnosis about available supports and contacts, can be lost at this time and they often remain outside the service system until a crisis occurs. One way of potentially addressing this issue is a series of guidelines for referral, which was the subject of recommendation 10, and there may be some role for the Department of Health and Ageing here.

Recommendation 11 goes on to suggest that:

The Australian Government establish clear and streamlined local referral pathways for dementia diagnosis, treatment and support, through Medicare Locals, localised primary health networks or other specialist dementia networks such as memory clinics.

This was taken a step further with consideration of a potential dementia link-worker program—the idea being that a key worker assist to manage an individual patient's case and link them in with the appropriate services. This is an idea that has been seriously advocated by the Alzheimer's Association, and their CEO, Mr Glenn Ross, put this case to the committee. There was a suggestion that such a program could be linked to any federal aged-care legislation and delivered by existing aged-care provider organisations or community organisations such as Alzheimer's Australia or Medicare Locals.

There is no doubt that this would be a terrific initiative; however, with projections that over half a million people will have dementia by 2030 in Australia, there will certainly be some logistical issues to consider. The committee has therefore recommended that the Department of Health and Ageing examine the case for establishing a dementia link worker program to assist in the ongoing case management of people with dementia and their carers.

In conclusion, this report is one that I think the committee should be proud of and I would like to thank all my fellow committee members. One of the things that came out of the report, which I have not mentioned in my speech was stigma, which the member for Hindmarsh mentioned. A lot of people are afraid of the diagnosis because of the stigma that is perceived to be attached to having Alzheimer's or dementia. In some of the inquiry hearings we heard that some people were more afraid of being diagnosed with Alzheimer's or dementia than they were of death, which is a horrible way to look at things because we have moved on with the ability to help and treat these people and given them a better pathway and a better life after diagnosis.

As well, one of the areas that I have not touched on is the problem as to financial assistance or legal obligations for people who are diagnosed, making sure that their carers and/or their families are made aware of all of the potential issues that come with the diagnosis of Alzheimer's in that some people have been the subject of what was probably some unscrupulous carers in the area. I am sure that we would like to make sure that that does not occur too often. Again, I would like to thank the committee and I look forward to the next parliament and working on the committee again with my fellow committee members. I commend the report to the House.