Sue Boyce (Queensland, Liberal Party) Share this | Link to this | Hansard source

I did not have the chance to say as much as I would have liked when this report was tabled yesterday. It is an extremely important report. I made the point yesterday that in many ways the situation for aged people, especially those with dementia and those displaying behavioural and psychiatric symptoms of dementia, reminds me of the institutionalised and insensitive way that people with disabilities were treated a number of years ago.

We heard evidence during the inquiry that the way that institutions, aged-care facilities, were established was in fact often part of the reason that people developed challenging behaviours and that large areas where people were congregated together in noisy places was not the way to deal with people with dementia. Someone referred to the noise being like oil on water for people suffering from dementia.

One of the very good visits that the committee made during this inquiry was to the Perc Walkley Dementia Learning Centre in Melbourne. We have in fact amongst our recommendations suggested that every state and territory should have a similar learning centre so that professionals, other stakeholders and families can experience what it might be like for people who have dementia. A number of the senators on the committee went through the experience.

It is possible within the set-up at the Perc Walkley centre to begin to get some idea of what it is like for people with dementia—how when your perception goes, big swirly patterns on floors can look like obstacles that you actually need to step over or walk around; how the stripe in the middle of a bath mat may look like a great cavernous hole in the floor; how when you are confused and your perception is not as good as it could be, every door can look the same, so quite simple things like putting signs on doors can assist people; how a bright, white bathroom may make it impossible for someone with dementia to know where the toilet is exactly, so something as simple as a black seat on a white toilet might assist someone who could currently be seen as suffering from incontinence.

There are a lot of simple things that can be done in design areas and it would be very useful, I think, for anyone contemplating building, refurbishing or renovating an aged-care facility to visit the Perc Walkley centre. It also would be very useful for families to have that opportunity to experience what it must be like for their loved ones. Clearly, for someone who cares for someone with dementia, particularly someone beginning to develop the behavioural or psychiatric symptoms, it can be terribly frustrating and terribly difficult. If you can perhaps have some sense of where that challenging behaviour is coming from, then the problems can be partly dealt with.

It reminds me, as I said, very much of areas in the disability sector where people will often misbehave—or appear to be misbehaving—simply because their needs are not being met. No-one is paying attention to them. No-one is understanding what they want. This might be because they are not able to tell people what their needs are. They may be in physical pain and not able to pass that on. However, if the same thing is being done to you over and over, when you have in your view expressed for it not to happen, then of course any one of us is going to get very angry and use whatever tools we have to demonstrate to others that we do not want that to happen. If it continues to happen, we will get angry. Understanding that can be very valuable for families and carers.

I briefly mentioned yesterday the problems that currently exist with the respite care that is available for people being cared for in the community who have dementia or are beginning to display symptoms of psychiatric and behavioural problems. Currently, the main respite that is available is a two-week holiday. Again, I am reminded of the disability sector where two weeks away with unfamiliar people in unfamiliar surroundings doing unfamiliar things is the least restful thing that can happen for the person who has dementia. It often means that when that person comes back home to the carer, who is supposed to have had a break, a rest and be refreshed, the behaviours of the person with dementia are far worse than they were before they went.

We took evidence that said that people with dementia are often better during the day than at night. It would be useful to many carers to have respite care during the day but for the person to come home at night. They would be in familiar surroundings at night so that they would not be challenged by the problems of an unfamiliar environment with unfamiliar people.

Another area I want to talk about briefly is the use of restraints. It was good to see that yesterday Alzheimer's Australia also brought out a report on the use of restraints and psychotropic medications in people with dementia. Clearly, if you have people whose behaviour is such that it is likely to cause them harm or others harm, you have to deal with that. The way we are dealing with that right now is certainly not best practice in any way. In the majority of cases, people are treated with psychotropic medications when often this should not need to happen, if the behaviours are understood, if the environment is changed—and we saw examples during our hearings of best practice where there was virtually no-one using medication.

Senator McKenzie got quite excited yesterday when we mentioned a facility in Warracknabeal in Victoria, because it is one of the towns that she knows very well in her area. The Yarriambiack Lodge is a fantastic centre where they have got rid of the staffroom. They got rid of the large-screen TV and bought a small 1960s box and had a TV fitted into it. Everyone in the place, except the staff, thought that was a fantastic idea. It is very rarely watched, because most of the people who live at the lodge have tasks—occupations—assigned to them. One woman assists with making beds during the day. Another, who is a nurse, spends her days rolling bandages. Whether these bandages are used or not is not the question, as this woman believes herself to be gainfully employed. She is not on any medication and she is enjoying her time. That is clearly a far better outcome than an outcome where she is sitting, full of medication, staring at a wall or a television that she is not comprehending.

There is a long way for us to go in terms of treating people with dementia better. Another area that reminds me in many ways of the disability sector is the current trend that we have to collect people with dementia and people with behavioural and psychiatric symptoms into one place. That is, to segregate them and to exclude them from the general aged-care community, whether it be within the community itself or within an aged-care facility.

Again, all we do is exaggerate and worsen the conditions for the people involved and make life more difficult for the staff involved. There is a lot of work to do in this area. I think all the senators involved could talk for a lot longer on the changes that we perceive need to be made.

Lin Thorp (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

Could I just concur with the remarks made by my colleague Senator Boyce. She is very correct in the sense that it was a very good inquiry. We worked collaboratively together very well and there was no difficulty at all coming to a set of recommendations that we all felt extremely comfortable with. Could I also take this opportunity to thank the secretariat for the excellent work they did in the preparation of the report and in organising the hearings et cetera.

The report recognises that, when it comes to the treatment and management of people living with dementia, we do need to do better. With our ageing population and the increasing numbers of people living with dementia, we must be sure that the care provided is the best it can be. Those living with dementia, the young and particularly the old, are amongst the most vulnerable people in our communities. We must therefore do all we can in this place to be a voice for their needs and an advocate for their rights.

The inquiry into the care and management of Australians living with dementia recognised that dementia is not a natural part of ageing. It recognised that dementia is a significant and growing element in Australia. We have more than 320,000 Australians currently living with dementia. However, every single day the illness touches many, many more. The report identified that 60 per cent of people living with dementia are women. The Department of Health and Ageing report of 2013 estimated that:

… nearly 1.5 million Australians are affected by dementia including the families and carers of people living with dementia.

The numbers therefore speak for themselves. The treatment and management of people with dementia is an issue that is too big for our nation to ignore. The estimations are particularly troubling when projections suggest that the number of Australians living with dementia will increase to 400,000 by 2020 and to almost 900,000 by 2050. Whilst age is often the biggest risk factor for dementia, there are currently an estimated 24,000 people living with dementia who are under the age of 60.

I am pleased that the inquiry placed a core focus upon assessing the needs of younger people living with the behavioural and psychiatric symptoms of dementia, who are often overlooked in political debate. It is vital that we remember and think of dementia as not just a condition which affects older people. The care needs of younger people are different and the service and care provided needs to reflect this.

In response, the report recommended an expansion to the Younger Onset Dementia Key Worker Program to provide support for all who live with dementia. The report also recommended that the funding for the Younger Onset Dementia Key Worker Program be increased and that the revised level of funding be sufficient enough to ensure that the planned review of the expanded trial has sufficient data to accurately assess the program.

Of particular importance to many people living with dementia in my home state of Tasmania is the recommendation in the report to explore options for the provision of respite in rural and remote areas. The unique symptoms of dementia and the current circumstances surrounding the limited options for appropriate care available in Australia means that family members and carers are burdened by additional strains. Dementia, after all, is more accurately thought of as an umbrella term for 'a syndrome which is associated with more than 100 different conditions which are characterised by the impairment of brain functions'.

I am pleased to speak on the tabling of this report, as it signals a first step towards identifying some of the greater issues that we in this place must recognise if we are to provide effective, appropriate and comprehensive reform for people living with dementia.

There are many significant and challenging issues for younger and older Australians living with dementia. That is why I not only welcomed but also considered it absolutely vital that the terms of reference for this inquiry examined: the scope and adequacy of the different models of community, residential and acute care for Australians living with dementia and BPSD;    the scope for improving the provision of care and management of Australians living with dementia and BPSD, such as access to appropriate respite care; and, significantly, as Senator Boyce referred to, the reduction in the use of both physical and chemical restraints on people living with dementia.

In particular, how we respond to the unwarranted and inhumane use of chemical restraints on people living with dementia is an aspect of dementia care which does require our urgent attention. Too often people with dementia are prescribed antipsychotic drugs as a first response, too often these drugs are used to chemically restrain those who experience the behavioural and psychological symptoms of dementia and too often the results are deadly or irreversible.

Whether restraints are physical such as chairs with barriers over the lap or chemical restraints such as lethal combined doses of mirtazapine and morphine, restraints rarely work to assist with the behaviour of people living with dementia. In fact, restraints can actually increase the likelihood of an incident of physical harm occurring, and if people are restrained in an immobile position for too long they can suffer from constipation, as well as pressure sores. Putting the physical impact aside, restraints also have the capacity to induce and become the cause of psychological harm as people with dementia may suffer increased levels of depression, fear and frustration. The symptoms of dementia can often be prevented and managed without the need to medically induce restraint in people. I must also note that the majority of these antipsychotic drugs are in no way intended to be used for the treatment of dementia, and people with dementia are at much higher risk of experiencing dangerous side effects.

Dementia reform makes social sense and economic sense. We have listened carefully to the stakeholders involved in the discussion, and I would like to thank the many people, particularly those in my home state of Tasmania, who contacted my office and made submissions to the inquiry. The recommendations reflect a key focus of the report, which was to assess both the Commonwealth and the state government services currently provided to those who suffer from dementia. They address the adequacy of care for people with dementia in a variety of settings, including the home, the community and acute care.

Mr Deputy President, I am aware of the time so I will prune my remarks a little, but I did want to put on the record the committee's appreciation of the evidence given to us by people from Tasmania, including Dr John Tooth. I commend to the Senate the excellent pioneering work done by Dr Tooth over 20 years ago. His work has become world renowned. In fact, he is considered an expert in this area in the United States and Japan. He was a state finalist for the Australian of the Year in 2007. He has been a pioneer for dementia care reform, advocating for a kind and humane response to treating people with dementia. He emphasises the importance of 'dementia specific' architectural design in order to create simple structures with a home-like interior. He has lectured in Japan, Canada, the United States and the United Kingdom. One way in which we can work on the model championed by Dr John Tooth is to make sure that we are educating staff to be skilled and caring. We must ensure that there are higher numbers of staff per person, and we must make a greater commitment to training and investment.

It is great to see, as you would know, Mr Deputy President, that the University of Tasmania is offering a free nine-week online course titled Understanding Dementia. It draws on the expertise of neuroscientists, clinicians and dementia care professionals. Not only is this course free; it is also offered to anyone who wishes to register for it. I understand that it is one of those rare courses where not only is there a great deal of interest when it comes to registering and starting the course but there is also an extremely high rate of completion.

At this point, I will curtail my remarks to say that, as nearly 1.5 million Australians are affected by dementia, including the families and carers of people living with dementia, please let this report be a call to action because we can and need to do better.

Question agreed to.