Wednesday, 26 June 2013
Health and Ageing Committee; Report
I will speak briefly on this report,Thinking ahead: report on the inquiry into dementia; early diagnosis and intervention, by the House of Representatives Standing Committee on Health and Ageing. It is one of the best written reports that I have read in a long time. As a committee member, I am proud to be associated with the detail of the report that very accurately reflects many of the views and perspectives and the work that is being done within Australia with respect to finding not only a cure for, or a slowing down of, dementia, but also the identification of the early diagnostic elements that will enable medical advice and support to come at a much earlier point.
The other thing that was important in all of this was the passion of all of those who were involved in the delivery of services and programs on the ground and I know that my colleagues who are speaking on this standing committee report will reflect much of the detail that represents the way in which we approach the issue and the way in which the committee reported on the breadth of the problem and the focused work that is occurring.
I thank my colleagues on both sides of the House for ensuring that changes were made so that people could speak on this particular report. I would also like to acknowledge: the deputy chair of the health and ageing committee who worked on this report, the member for Swan; the chair of the committee, who was here a moment ago; and the other members of the committee—the member for Hasluck and the member for Bass. They have all been members of the committee and contributed to this report.
It gives me great pleasure to speak about this report on the early diagnosis of and intervention on dementia, titled Thinking ahead. This report is relevant to all of Australia but particularly in my electorate as one of the oldest in the country, with almost 20 per cent of people over the age of 65. It has one of the highest rates of people diagnosed with dementia in the country. I have heard countless tales from families and constituents of my electorate firsthand about the devastation it can cause in our community. We on the inquiry when we travelled to most major cities and all around the country also heard firsthand from different communities about dementia and the devastation it can cause.
This inquiry and report before us make it quite clear that there needs to be greater awareness of dementia and that more action towards a dementia-friendly future needs to be taken. We know that one of the most important things that we can do to combat severe dementia is ensure that patients are diagnosed in a timely manner. With early detection the quality of life for people with dementia as well as for their family and carers is often dramatically increased. We heard this during the inquiry. People, for example, when diagnosed in a timely manner can put their affairs in place and work out the future because they still have the capacity to do so. With early detection the quality of life of people with dementia as well as their families and carers, as I said, is often dramatically increased. It gives families that opportunity to make plans and arrangements for the future, something that we can all appreciate is incredibly difficult for all involved.
As elegantly stated by the chair of the committee, the member for Shortland, a very effective way to promote early diagnosis is to promote greater awareness of dementia. This is so very true and so very important. We heard this evidence and had this advice given to us at every stage of the inquiry—that early diagnosis is so important. An effective way to promote early diagnosis is to promote greater awareness of dementia. If we do this, we can ensure that friends and relatives recognise those very early signs. This will help to promote a dementia-friendly society.
We heard that when people see those early signs and talk to their GPs very often it is just brushed aside as 'getting older' and that as you get older you forget things. But these are signs and we need to ensure that GPs and other people in health services are well aware of the early signs. A dementia-friendly community involves taking an holistic approach to care, support and treatment. It is all about, as I said, educating not just GPs but the health industry, the community sector and support groups so as to enable them to better care for people with dementia and provide assistance to their carers. It is all about ensuring that the community continues to value Australians with dementia as well. One of the greatest barriers to improving outcomes for patients remains that stigma that is still attached and that many feel when discussing dementia with their families and friends. In fact, we heard evidence that even GPs associate with that stigma and will sometimes just brush symptoms aside as someone getting older or forgetful, without really looking deeper into the symptoms that patients present with. That means that many people do not seek early treatment from health professionals and end up with outcomes much worse than if they had.
Another common barrier is that many people still believe that dementia is just a natural part of the ageing process. As a result, they do not discuss their dementia with their doctor, their family or their friends. Vice versa, their family and friends do not discuss it with them or with other health professionals since they do not believe anything can be done to delay the onset or to slow the progression of this disease.
In its report, the committee has also called for a national awareness campaign aimed at dispelling the myths about dementia, ensuring that people recognise the symptoms of dementia and encouraging people experiencing those symptoms to seek a full assessment. There are assessments which can be done to determine whether someone is suffering from signs of early onset dementia. If we can achieve this timely diagnosis of dementia and provide people with the necessary tools, skills, treatment and support, we will go a long way towards improving the quality of life for many older Australians.
During the inquiry, we travelled to different parts of the nation. At one point the committee visited a place called Norman House in my electorate of Hindmarsh. Norman House is a day care centre for people who suffer from dementia.
It is a fantastic facility. It is at the cutting edge and is one of the best facilities I have seen. It helps people to continue within a community group while giving their families the respite they require. We saw their activities—people meeting, cooking, eating and drinking in a normal household environment.
I was also lucky enough, a few months ago whilst we were still conducting the inquiry, to be invited by ECH to open Seasiders in Laidlaw Street, Henley Beach, which is also in my electorate. Seasiders is another great facility catering for people who have early onset dementia. It provides everything from physiotherapy to community activities in which families can participate. We saw many of these facilities around the country. One that comes to mind was in the member for Shortland's electorate.
Yes, that is right—East Lake Macquarie Dementia Service. We conducted a public hearing of the inquiry at that facility as part of our visit there.
The number of Australians with dementia will quadruple by 2050. That will be a large number of Australians with this disease. This inquiry has made recommendations which should be implemented by governments—both current and future governments—to ensure we have in place the facilities and services we need to deal with the growing number of people with dementia. I commend this report to the House.
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:
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:
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.
I rise to add my remarks on the report by the House of Representatives Standing Committee on Health and Ageing on dementia. Alzheimer's Australia state there are over 320,000 Australians living with dementia and:
This number is expected to increase by one third to 400,000 in less than ten years …
Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050.
Dementia is a leading cause of death in Australia. In 2010, the most recent year for which the data is available, it was the third most common cause of death.
Dementia is not a single condition, rather it is an umbrella term that encompasses a range of conditions that affect memory, thinking, behaviour and ability to perform everyday tasks. Characteristics of dementia involve impairment of brain functions, including speech, memory, perception, personality and cognitive skills. Its onset is typically gradual and progressive—in that as the condition develops, the patient deteriorates and it is irreversible. For the majority of people with dementia, assistance will eventually be required for activities such as making decisions, managing relationships, coping with feelings or emotions, and undertaking cognitive or emotional tasks.
Although dementia occurs more commonly in older people, contrary to popular belief it is not an inevitable or 'normal' part of the ageing process. Dementia has wide-ranging implications for carers, families and friends of people living with the condition. In my home state of Tasmania, the Wicking Dementia Research and Education Centre is at the forefront of research and support for individuals, their families and carers. The Wicking centre is the largest health research group in Tasmania. The success of the Wicking Dementia Research Network, funded initially in 2010 by the UTAS Community Engagement fund, has created greater connectivity between dementia service providers and researchers. I was most pleased to show the Hon. Mark Butler, the Minister for Ageing, the great work they are doing last year when he visited my electorate of Bass.
It is critical that we support the development of a highly educated and skilled workforce and attractive career paths in aged care. Having a skilled workforce is particularly important as the ageing of our population is changing the face of care. Care needs are becoming more complex as people live longer and require care associated with dementia, diabetes and other chronic diseases. These mentor-based clinical placements integrate theory and practice and ensure that the future aged-care, health and medical workforce is equipped with the skills and knowledge to meet the care needs of Tasmania's growing ageing population. Masonic Peace Haven aged-care facility in my electorate of Bass has been closely involved in this program, and I believe it has been a valuable teaching tool for students. I thank the committee for the opportunity to chair our meeting in Launceston.
Dementia can happen to anybody, but it is more common in those over the age of 65 years. It is essential that a medical diagnosis is obtained at an early stage when symptoms first appear to ensure that a person who has a treatable condition is diagnosed and treated correctly. If the symptoms are caused by dementia, an early diagnosis will mean early access to support, information and medication and preparations for the rest of their life.
At present there is no prevention or cure for most forms of dementia. However, some medications have been found to reduce some symptoms. In Launceston we received evidence that shunting—removing fluid—does assist some people. Support is vital for people with dementia and the help of families, friends and carers can make a positive difference in managing the condition.
I wish to place on record my thanks to the late Hazel Hawke, who worked to raise the profile of dementia and the importance of investment in research to improve the quality of dementia care. As Ita Buttrose, President of Alzheimer's Australia, has said, her courage has left a lasting legacy. I thank the secretariat and those who took part in this inquiry, particularly those in my electorate who gave evidence when the committee went to Launceston. This committee is a true reflection of the fact that most members come to this place to do the right thing by the people of Australia.
Federation Chamber adjourned at 16:58