Sue Boyce (Queensland, Liberal Party) Share 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.