Helen Polley (Tasmania, Australian Labor Party, Shadow Parliamentary Secretary for Aged Care) Share this | Hansard source

As I have mentioned on several occasions in this chamber, the Assistant Minister for Social Services, Mitch Fifield—who has just entered the chamber—announced on 26 June this year that the government would be scrapping the dementia and severe behaviours supplement. This one-year-old supplement ensures that vulnerable people receive the care and support they need so they can live their lives with dignity and comfort.

It is obviously essential that this government considers very carefully just what this decision means for aged-care providers, many of whom survive on thin profit margins. The removal of this dementia supplement means that many of these providers will no longer be able to invest in the staff and infrastructure necessary to care for those with the severe psychological and behavioural problems associated with dementia.

In addition to that, they need to consider what this decision means for those who actually live with dementia and their families. What is sad about the debate about this supplement is that we very rarely hear about those who are most affected. Even if they aren't necessarily capable of telling the story completely themselves, their loved ones can—even if we can really only imagine what some of these people are going through.

I want to change the conversation; I want to tell you about the people who will be affected by the government's decision to remove the dementia and severe behaviours supplement. The stories of these people must be heard. They must be heard so that those people living at the most vulnerable point of their lives are not abandoned.

I am afraid to say that this has a personal dimension for me. My brother-in-law was 38 when he was diagnosed with dementia. The effect on him as an individual was quite profound. But just as profound was the effect on his wife, his extended family, and, very directly, on his two primary-school-age children. As they became teenagers they could not comprehend why their father insisted that they should have to be in bed by seven o'clock, because, unfortunately, he was not able to comprehend that they were becoming young teenagers and needed the guidance of a father. The really sad thing was it takes so long for someone to be correctly diagnosed with dementia. Certainly 38 is a very, very young age. He died when he was 50 and, although very sad and that in itself a tragedy, in some respects it was a relief, because my sister was determined to care for him for as long as she could.

It is unfortunate because not only is it short-term memory that goes but personality changes as well. Not everyone has the ability and the support mechanisms to be able to care for their loved one at home. Sufferers also lose the ability to be able to communicate. The intimacy that a married couple share together is lost and in some cases there is no sharing of their feelings at all. But, of course, this is just one story in hundreds of thousands of people in what will become a tsunami that will affect the globe over the next 10 to 20 years.

Recently I was fortunate enough to visit Alzheimer's Australia's Perc Walkley Dementia Learning Centre in Melbourne. It was an experience I will quite simply never forget. I thought, having firsthand experience with my brother-in-law and my father-in-law, that I had some knowledge about the impact that it has certainly on families but on also the individuals. Thanks to the incredible work undertaken by those at the centre, anyone can experience what it feels like to live every day with dementia. This is achieved by allowing participants to stand in front of a giant, two metre-tall projection wall with an interactive touch screen and gesture-sensor technology and try out the 'virtual dementia experience' for themselves. I witnessed the use of special effects so that surfaces ripple or change colour so that my senses were overridden and I found it very hard to concentrate.

But what was impressive and what was impressed upon me by those at the centre was that people with dementia often struggle to communicate and engage with others. So it is not always easy for them to tell others just what is so frightening about everyday life activities. We need to do all we can to find out what it is like to live with dementia. These people cannot be abandoned. Alzheimer's Australia is a fantastic organisation and I would like to take the opportunity to acknowledge the work by the former National President, Ms Ita Buttrose, and at the same time congratulate Graeme Samuel AC for taking on the very important role as the new National President of the Alzheimer's Australia.

I would like to share with you some stories that are quite heartbreaking. I will take the example that has been shared with me of Mary and her father, Ted. Mary's father has Alzheimer's disease and over a period of five weeks was moved three times between a hospital and two different facilities. Ted found these changes very distressing and his behaviour reflected this. Six weeks after her dad entered permanent care she received a phone call from the provider, who told her to, 'Take a deep breath and brace yourself'. Mary was told that her father had thrown a chair through a window. No-one was injured but he was now locked in the courtyard for everyone's safety.

People like Mary's dad need extra care and support. They need extra attention and for this to occur the providers need extra assistance. This government needs to take leadership on this issue. I will not allow the minister to abandon those people displaying severe psychological and behavioural problems associated with dementia. I will not let up on this. I have spoken numerous times. I will continue to make a noise; I will continue to speak out and I will do so not just for the aged care providers shouldering an enormous responsibility and workload but for people like Mary and her father, Ted.

I know, as I am sure the assistant minister already knows, the sector are outraged, disappointed and feel totally abandoned. You know, Minister, because you snuck in here on 26 June and you did not consult with the sector at all. This government, as it has with so many policy areas through this budget, has attacked the most vulnerable in our community. This government knew for nine months that there was a blow-out in the expenditure on dementia supplements support, but they did nothing. They just sat on their hands, because they have no vision, no policy and they do not have a minister for aged care—unlike the previous government, who gave the priority to this area. We did the heavy lifting. What you are doing now is trying to unpick the good work that the previous Labor government did in consultation with this sector. We on this side of the chamber will continue to speak up. Minister, if you were to go out and talk to the sector and listen to them—which they are saying you are not doing—you would find out that what I am saying is the reality of what is happening currently in the sector. Those people suffering with dementia, those caring for those people with dementia, their families and the community deserves better. It is shameful that this government is not prepared to stand by the most vulnerable in our community.

As I said, it is not just me and it is not just the opposition talking about these issues; it is the sector themselves. I would encourage and urge the assistant minister to go out and speak to the sector and take advice from them, because at the moment they are feeling quite let down, and that is apart from the people and families affected by dementia.