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Community Affairs References Committee
10/07/2013
Care and management of younger and older Australians living with dementia and behavioural and psychiatric symptoms of dementia

DICKENS, Mrs Anne, Private capacity

MATHERS, Ms Kyla Anne, Private capacity

OLDHAM, Mr Glen Andrew, Private capacity

CHAIR: The committee will now commence its public hearing into the care and management of younger and older Australians living with dementia and the behavioural and psychiatric symptoms of dementia. Committee proceedings are protected by parliamentary privilege. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to a committee and such action could be treated as contempt of the Senate. It is also contempt to give false or misleading evidence to a committee. We prefer all our evidence to be in public but under a Senate resolution witnesses have the right to request to be heard in private session. If you do wish us to hear evidence in private session, and it would be really good if you could notify us early in the piece, we will consider a request to be heard in camera. If you object to answering a question you should state the ground on which that objection is taken and the committee will consider that in making its decision as to whether we will insist on an answer. If we insist on an answer you can then ask to be heard in camera.

Could people please turn off their mobile phones, including the people who are listening. We have a pretty strict rule in this committee: if your phone goes off you are responsible for supplying chocolate to the committee!

This public hearing is being broadcast via the internet.

Finally, I welcome our witnesses to today's hearing. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. Is there anything you wish to add about the capacity in which you are appearing?

Ms Mathers : I was a carer for five years across standard residential care, BPSD and the community. I am just here to talk about the things I have seen and my wish that aged care could be a lot more dignified as people get older.

Mr Oldham : I am a community carer at the moment and was a residential carer. I would just like to highlight some of the inadequacies of dementia care at the moment.

Mrs Dickens : I am a retired carer. I worked for almost 20 years in a dementia-specific home. I am here basically to talk about the change in care that I have seen.

CHAIR: I would like to ask each of you to, if you want to, make an opening statement, and then we will ask you some questions.

Ms Mathers : As per my submission, it is great to talk to you guys and great that someone is actually wanting to listen to what we have to say. My interest in dementia care came from being diagnosed with multiple sclerosis. I went through a period of cognitive impairment that was just like a dementing illness—I basically did not know what day it was. I still, to this day, remember how people spoke to me and how they treated me, which was not good. The ex has left—kicked his butt to the kerb. So I decided I needed a career, went back and got my certificate in aged and home and community care and then landed a job at the old ADARDS site caring for those with dementia. And it was wonderful. I got to work at a pace that those people could handle, I got to spend time and explain what I was asking of them when I was changing them or showering them, and I got to talk to the men about their shaves and things like that and got a good result in being able to shave them and care for them. I was able to speak to their family members and interact and learn more about the people I was caring for in order to care for them in a better way. And that is what I would like to see again for people in that situation.

I do not believe there is enough time spent with people with this cognitive problem. They have this illness through no fault of their own, and they are just treated like a herd of sheep. I got an injury through needing to rush people; I got a really good swift kick in the knee. I still carry that injury to this day. I had taken concerns to management three or four times and was told there was not a problem. I said, 'But I can see a solution, so there must be a problem.' At my last interview with the CEO—it was the CEO at that stage—I sat down and said, 'This is the problem, because of the injury' blah blah blah, and I said that this could be solved. And he said no; there was no way they were going to increase staff numbers in order to treat these people respectfully. We as carers were expected to get nine or ten people up in just over an hour—wake them up, shower them, dress them and do a full bed change if need be, and have them sitting out at breakfast. That is just not right. It is those people's homes. They should not be rushed.

The quality of food that was served was abysmal. I would not have fed it to my dogs—they ate better. It was not good. When you are at that stage of your life, after having paid taxes for all those years, you deserve better. In another standard residential care facility that I worked at I was doing feeds one night on an afternoon shift and I was growled at because I was taking too long. This lady had swallowing difficulties, so I was taking my time and giving her drinks in between mouthfuls and things like that. In the time that I fed this one lady, the other two carers who were on with me at fed eight people. That was just shovelling it in. One of them actually came in and said 'For god's sake' and took the bowl off me and started feeding this lady, shoving food in her mouth. The lady was battling. This lady was happy and content while I was feeding her became very stressed and very uncomfortable. Again, I resigned from that facility.

CHAIR: You summoned up the courage.

Ms Mathers : Yes. I said, 'I'm sorry: I can't work here; I can't do it.' Even in my role in community care, we only got an hour or two at the most with people, and that was when I was doing in-home respite for a deaf man with dementia. I got to spend two hours with him so his wife could go off and do things.

When I left my role in BPSD I had a sit down and said that there was a problem and that I could see the solution. I was told that that was not going to happen. I then got physical and verbal attitude from them that was very intimidating, at which point I just said, 'I'm sorry: we've got a problem.' I was told, 'Oh, no, we don't.' I said: 'Yes, we do. You are trying to intimidate me and you are trying to intimidate the wrong person. Here's my resignation.' They said, 'You can't do that.' I said, 'Listen, mate, I do not need and nor do I want a job this badly that I will put up with the way I am being expected to care.'

I was caring for my grandfather at the time. His dementia was progressing at a rate of knots. He was 86 and had gotten to a good stage in his life. There were people doing his in-home care and ADLs and things. My grandfather went 2½ weeks without a shower. I checked the notes, and they said, 'Refused to shower' and 'Refused to shower.' I went in and said to him, 'What's going on, mate?' He said, 'It was too cold or this or that.' I said, 'For god's sake, there's a fan heater in the bathroom; I put it there.' Me being me, I said: 'Get your rancid old butt in the shower. You're having a shower.' I had to put my foot down and say no.

I had my pop in the lounge room at the time and we sat and spoke with managers and the person who was caring for him and said: 'He can say that he doesn't want a shower. But he's soiled. You know that that's not good. You can't leave him like that.' Then I would get a call a couple of hours later asking me to come up. I said, 'What's up, pop?' He said, 'I just need to see you.' That happened a couple of times, and then it clicked, so I would just say to him, 'Right, grab a towel and I'll meet you in the bathroom.' Because I was a family member, I could say 'Get your rancid old butt in the shower' to him. There was not time for the carers to spend to say to him: 'Look, you need a shower. Your skin is going to be horribly excoriated if we do not shower you.' They had an hour to go in and do what they had to do. And he was a stubborn old bugger. That was really hard.

I was a carer. Although we were there providing meals and all the rest of it, I had three kids of my own at home. I was on my own, having just been through a fairly horrendous diagnosis. I could not be there early in the morning. I had kids to get to school and stuff like that. So I was not there to make sure that he was clean and washed, and it would not be until midday that I could go. I would go out and do his lunch and stuff. But, by that time, he was badly red and yuck, and it would take me a couple of hours to make sure that he was cleaned up properly and properly coated in all the good creams to make sure that he was not going to be in a really bad way and in hospital.

I do not know what the solution is. We as a group have come up with a plan to restart a new facility for 24-hour care, but with regard to community and stuff like that I do not know what you can do, because, unless the funds are there to care for these people, nothing is going to change. We are now down the track of having to keep pumping money into Alzheimer's research. That is great—we do need the research—but 37 years ago I did the MS Readathon and got awards for how much money I had raised and how many books I had read and stuff, and 37 years later we are still looking for the answer. So it is not going to be a quick fix. No matter how much money we pump into research, it is not going to happen in the next two years. In the last little while, there have already been two or three different changes to the way they are going and the way they are thinking about what is happening in the brain when it comes to Alzheimer's. So it is still a way off. We are not going to get the answers that we need like that. So we need to concentrate on caring respectfully for these people in the meantime.

We really need to concentrate on care. Just because it is written does not mean it happened. I saw things that were written in my pop's community notes, and I was just like: 'Really? That didn't happen. That was just as it was yesterday.' There were things that I saw that were not noted. My pop was getting pressure sores, pressure areas, and they were not noted. As a carer, you would have seen that while you were showering him and drying him. But it was not noted. No-one said anything. I went straight up to the doctor, and the doctor said, 'Strip down, old man.' We stripped him down and the doctor just looked at him and went, 'Oh, my God; what have you been doing?' What can you do? I was in a sticky situation because my dad was also caring for his father, but he is so anal about the way things happen that he was not checking things like that either.

As I said, I am stuck unless changes are made and more is expected and there are more checks and balances to things. We have got an Aged Care Complaints Scheme that will not go back and check something that someone has complained about because they have already visited that before. Hello? If it has been visited before and it is being complained about again, why the heck aren't you going back there and double-checking on it? The problem is still there, but it is just fobbed off. It is a really tricky situation. You have got an accreditation team that come in, but homes and community services know that they are coming before they come. I used to work under a director of nursing who used to have us running around frantic for a week before the accreditation team came because we had to get things up to scratch. That was in the early days. It was like: shouldn't we be keeping those things done all the time; shouldn't we be operating like that on a daily basis, not just when the accreditation team is coming? I put in a complaint, and the state accreditation did not come in; they sent accreditors from the mainland. Bang! Pinged on nine points, because it was a spot accreditation.

The same thing happened at a nursing home my grandfather was in. Someone complained, the nursing home were not informed of the impending accreditation and they got pinged on two or three points. That was because there was no notification. But you have accreditors notifying nursing homes that they are coming, so what is the point? They should be coming in at any time of the day or night and sussing out what is happening. They should be able to walk in at whatever time they please to have a look, and that should be welcomed because as providers of care we should be able to say, 'Yes, everything is up to scratch. We are doing the right thing. We want to look after these people in a way that they need to be looked after.'

As I said, my grandfather fought for his country. He fought for this wonderful country that we have. We have a damn good life and it is because of the people who fought for us to have it. Why aren't we now looking after them? That is basically all I have to say. I have rabbited on for long enough!

Mr Oldham : I will probably lean more towards our training and where we are at with that. When I started out as a carer 13 years ago I did a course on dementia and Alzheimer's competency. I got the certificate. There were 15 of us who sat that and I was the only one who passed, so I was feeling pretty chuffed. After a while of having that certificate I thought, 'What do I do with it? I am accredited in dementia; I might as well go and work in dementia.' So I went to ADARDS, John Tooth's organisation. I was lucky enough to be allowed to volunteer for three weeks without pay just to see if I was suited. At the end of those three weeks they gave me a position. I took that certificate that I had and I put it at the bottom of my resume because the book learning that I got for that piece of paper was rubbish. When I went to ADARDS I saw the way care was supposed to be given to people with dementia. You need to be able to speak in their language and take the time to deal with their issues—and, believe me, they have issues. But sitting down for five minutes with someone can resolve that. Not everything needs medication. I think our care and training now for dementia has slipped very low. I have actually seen carers who have walked up to someone with their lunch, put a spoon in their face, said, 'They're not hungry,' and walked off. I had to pull somebody up once and say, 'Stop. Just wait a minute.' I whispered to the woman, 'I have your lunch here.' She opened her mouth and ate her lunch. That was a woman who would have missed her lunch all because someone did not ask what the trigger was or just did not understand.

Senator THORP: Was that at ADARDS?

Mr Oldham : That has nothing to do with the facility. I am not here to bash a facility or anything like that. But I am here to mention things like that. Is this the training that we are going to allow to go forward? People come in and start changing somebody with the curtains open. Would you do that to your mother? You would not. Those are just a little things, but it goes a bit deeper than that. If you have a look now at facilities, and this is all facilities—do not get me wrong; I am not racist—they are employing Sudanese, Filipinos and so forth. So you now have somebody in their 80s who is struggling to understand what you want in the first place. They have somebody looking at them and saying, 'Come on. Come on now,' in an accent they do not understand. How does that provide good care?

So we need to revisit especially dementia. We need to revisit our training. We need to be able to provide people with ways to reason with people with dementia. It is not always about them taking a pill. The greatest thing I ever learnt from ADARDS was from Allan Bester when he said to me, 'You will go all right, mate, if you remember you are in their home and you treat them that way.' There are people you can reason with. There are people I have sat with and talked to for 20 minutes and got them to comply with whatever I needed them to comply with. There was no need for a pill. There was no need for rushing.

But we are starting to move into an area where it is easier to say, 'I've got five residents, I've got to have done 10 residents'—or whatever it might be—'and you are a bit hard.' I actually had a carer say to me, 'I can't do this one, he doesn't like me.' That is okay. In the old days there might be a man that I could not do, so I might go and get Anne, and Anne could do that man. Then there might be someone she cannot do but I can. That used to work all right. This particular carer could not do the man because he did not like him, and he could not do the woman because she did not like him either. So he spent a great deal of time in the kitchen while I was doing a lot of work.

Our training is the keyword that we talk about with dementia. When John set Adards up he set it up for wandering and problem dementia. What happened to that? Now there is a bit of psych being mixed in with that as well, and these people have behavioural problems but not necessarily dementia. You have a look at our set-up for respite. I work in the community as well, and I work with a lot of dementia in the community. They get sent to respite—but where do they get sent to? They get sent to a lock-up dementia facility or they get sent to a facility for dementia. So their early-stage dementia is suddenly confronted with what they are going to be six months down the track. I do not think that serves any great purpose. My view of it is that we need to revisit training and get that right.

Dementia is a specific disease. It needs specific people to handle it. It cannot be a five-minute rush job. It cannot be a 10-minute care job. It has to be 24-hour care. That is how we did it in the old days. If someone goes to bed at four o'clock in the afternoon and wakes up at three o'clock in the morning and thinks that is breakfast time, then that is breakfast time. You cannot say, 'Shit, go back to bed, here's a pill.' You have to live in their reality. That is where I am coming from.

Mrs Dickens : I am not very good at expressing myself verbally, so bear with me. I left a really good nursing home over 20 years ago to work at a specific dementia home. The home I left was in those days a really wonderful home, but dementia people with problems were physically tied to beds and chairs and everything. It was very exciting to go to a new place where they could wander freely and not be tied down, medicated and nobbled. I saw absolutely excellent care; staff were well trained, we all worked together as a team, we worked in a home-like environment, and it really worked for dementias with problems. We never had the problems that they are having now. I worked there for 20 years, and I saw a big change in the care of residents: staff cuts, going back to more institutionalised care in the place I had left almost 30 years ago. To me, the care of dementia is going backwards. I feel medication is used more now to restrain, and that is just as bad as physical restraints in my opinion.

I will let you ask me questions, because I am not very good at this.

Senator THORP: At the place you worked you saw changes occur. Were they changes that occurred with a change in management?

Mrs Dickens : Changes were starting to happen before change of management, I guess due to funding, but things had already started to change anyway. In my opinion, it got progressively worse.

Senator THORP: I think you may be involved in doing exactly this. In an ideal world, if you were able to design, build and staff a facility specifically for people with problematic dementia, around behaviour et cetera, what would it look like and how would it be run?

Mrs Dickens : It would be very homelike. There would be a lot of thought put into the staff and staff training; there would be free gardens et cetera for people to wander. Just very homelike—not threatening.

Mr Oldham : Have a look at most of the facilities that are lock-up, ADARDS aside: they have big windows, you can see out to the garden, you can walk around your lounge room, you can walk into your bedroom and look out the window to the garden—you do not go out there; you just look at it.

Senator THORP: It is out of reach.

Mr Oldham : Yes. That is almost setting people up to fail, isn't it? 'It's there; it's just that I cannot touch it.' Just in my experience with the ADARDS model, there is the fact that they could wander around the garden, and they had the opportunity to wander from house to house, sit down and have a cup of tea. They are not locked into one area. That model works. It is honest care and you are not locked in as a carer to just one person—'You're my resident. You'd better stay on this side of the fence.' Everybody looks after each other. If you are concerned about somebody, you make a phone call—'Yes, they're over here. They're having a cuppa.' The food and things like that that we used to have worked. It was absolutely brilliant. If family came in to visit their loved ones, they could have a cuppa and a biscuit, a sandwich or whatever they liked. There are the constraints of these times. I have seen a plate of biscuits brought down for afternoon tea—you have nine residents and you get nine biscuits. If one of them wanted two biscuits, that was unfortunate, or if you had a visitor you would just have nine biscuits. We do settle them in and make a cup of tea for them. I would like to see what John started brought back in spades because this dementia population is going to explode. As I said, I work in the community and I see it all the time.

The other side of community dementia is that there is nowhere for intermediate dementia patients to go. Half the time you cannot get into a place. The wife of one of my clients had a heart attack. He had dementia and there was nowhere for him to go, so his daughter had to come up from Huonville and look after him. She was running a business and was in tears. She said, 'I've got a family, I've got a business and a can't leave Dad here. Mum's in hospital with a heart attack. What do I do?' I said, 'You'll need to ring ACAT and see if they can help out.' They said no. The only answer was to ring an ambulance and have him put in hospital. I do not know whether that is acceptable, but, in an honest world we would have somewhere for intermediate and for emergency care.

Another of my clients had nowhere to go. This is a community client and he could not get in anywhere. The only place there was for him to go was Nubeena. His wife did not drive. She lived at Howrah. His daughter lived in Huonville, so she had to come up from Huonville, pick up her mother, drive to Nubeena and drive back to Howrah. That is the sort of thing that we need to improve.

Mrs Dickens : I would like to say this while I am thinking about it. My mum is in another nursing home. They do not have a dementia unit but they do have dementia patients. At night time, Mum gets really upset because of their wandering and screaming sometimes. She is well aware that they are medicated to stop that. Also, in some of these dementia care places you have people in tub chairs. They cannot defend themselves, they cannot speak up for themselves and you have behaviour problem dementia patients in the same area. I have seen them putting pillows over their face and trying to pull them out of their chairs. You cannot mix behaviour-problem patients in with non-ambulant patients. That is another big problem. They do need specialised care in a specialised facility and we really lack that.

Senator THORP: Do you want to return to my original question about 'in an ideal world'?

Ms Mathers : I will supply you all with copies of some documentation in a minute. In an ideal world I believe that we would have an area for people with dementia that was very homelike, that had the highest quality of freshly cooked meals, where time was taken to make sure that people did eat. If they did not eat, at least put a name on their meal and put it in the fridge, so if afternoon staff came on they would know that that person had not eaten. So at least their nutrition would be satisfied.

I would like to see a hell of a lot more concentration on fluids for people, whether that be having jelly for them to eat just so that they get some extra fluids. The reason we have so many problems with bowels is that people are not getting enough fluids. If you do not drink, you do not poop. So you are then forcing medication on people. We need to lower medication use because, when you are medicating people, there is a higher risk of falls. You have then got the problem of the hospital system that is overrun because you have people then shoved into hospital because they have just suffered a fracture.

It is all about working together in that respect. We are trying to protect our residents, but we are also trying to take the burden off hospital systems, of having these people in there because we have medicated them up to the eyeballs and they have gone 'bang' and fallen over. As I said, there needs to be respectful care. That is exactly the care I am aiming to provide and what our group are aiming to provide so that we do have an amazing care facility.

Norway, I think, has a wonderful facility—it is like a little community. People can go to the shop. The shop is run by carers, but they can purchase things and take those things back to the facility. Staff know that they are to put them in a pantry and that those people have just been to the shop and purchased them. They can then help with things like that. It is to try to give people a sense of self-worth, a sense of usefulness. Whenever the word 'dementia' gets mentioned to people, automatically things are taken away from them. They are going to bring someone into the house to do their housework, they are going to bring someone in to shower them, so they are taking away any independence that they had. We need to keep that for them.

Senator THORP: From what you are just saying, it sounds to me as though you are envisaging a continuum of care?

Ms Mathers : Yes.

Senator THORP: Correct supports when someone is first diagnosed and first starting to need some help with things—

Ms Mathers : Yes.

Senator THORP: but it does not have to be taking away that person's independence completely—and appropriate support and then support for the carers so that, if their wife has a heart attack, as you mentioned earlier, there is an appropriate facility that is intermediate rather than going into an acute setting or a serious setting, which frightens the bejesus out of someone if, for example, they have only just recently been diagnosed. It sounds to me that you are looking at a continuum of care that is very much based on individual needs and on the carer having the time and the resources to know the person they are looking after.

Ms Mathers : Exactly. That is very important.

Senator THORP: Good nutrition?

Mrs Dickens : It has got to be individualised care, not—

Ms Mathers : Yes.

Mrs Dickens : So it is super important.

Senator THORP: What about the issue of advocacy, because we are talking about people who, particularly when the dementia has become quite serious, may or may not have someone who can speak up for them? How do you feel about the current advocacy resources or complaint systems that are available?

Ms Mathers : Atrocious. That is my view. My view is that it is not good. When I was working at the Royal, you had a team. They had the best thoughts of what it was for people when they came into the hospital as an older person. It was: 'Well, we're just going to call advocacy in. We're just going to take away any control from the family. We're just shoving them in a nursing home and they've got no say in it.' You cannot do that. These people are people. They are human beings. They have feelings. They have wants. They have needs. You need to respect that and work with the families, not just tell the families what you think they should do. You can advise, but don't just automatically assume that you have the right to say, 'No, you're not doing it that way; you're doing it my way,' because that is not right. No-one deserves to be treated like that.

Mrs Dickens : I think it is a problem too once these people are in nursing homes. Unless the families, who are often very reluctant to, do, there is no-one to speak out for them, because they cannot speak for themselves.

Senator MOORE: It seems that a lot of the issues you are talking about are about resources. From your experience working in the system, do you believe that a lot of the restrictions and changes have come about through budget?

Ms Mathers : Yes.

Mr Oldham : That is for sure.

Ms Mathers : Absolutely. That is for sure.

Senator MOORE: So it is fewer people, less time.

Mr Oldham : What happened to the original ADARDS? The original ADARDS that John Tooth set up was funded, state and federal. Funding was pooled, so then it could not meet its obligations. We are talking about a facility where the director of nursing used to go to family and say, 'Look, please don't put anything in the paper thanking ADARDS, because, every time you do, my phone rings off the hook with people wanting to get in.' That is how well respected the facility was. Everybody that came there felt welcomed. It had Friends of ADARDS. It had all of these groups just trying to keep this little place afloat. And, to my mind, government went, 'Pff,' and turned their back on it.

When you have an organisation that has Japanese people coming to learn how to care for their demented family members, asking, 'How does your facility work?' and, 'Can we replicate that here?' that is a really, really good thing and a positive thing from a little place like Tasmania. And we let it go. We just let it go. Funding was not there. You cannot run the place without funding. Yes, our staff levels were a bit higher than other nursing homes, but their results were so much better. You are talking about people who cannot fend for themselves anymore who had a quality of life and people who cared enough to sit down with them for 10 minutes, as opposed to giving them 10 minutes to shower. It was so much better.

As you say, we are talking about funding. We are talking about following dollars. Once we had pooled the dollars, it had to be sold. It had to be taken over. And what happens when little things get swallowed up by big things?

Senator THORP: It sounds to me like the principles of training that you are talking about are applicable across all people in aged-care facilities, all people with dementia. The group that you were dealing with at ADARDS were quite specific—

Mr Oldham : Yes.

Senator THORP: with the issues; hence what we are trying to do here, which is understand the needs of that particular group.

Mrs Dickens : That covers behaviour problems and everything. We used to take people that other nursing homes could not handle with great results, so it worked—it really worked.

Mr Oldham : People they could not control up there they used to send to Adards. We talked about medication—that has a place but it is not the be all, end all. You have an opportunity, because you have time to try and change the situation. You use your skills—the greatest thing I learnt from my time there is that your skills are often better than any medication: change the scenario, change the situation, how you approach somebody—'G'day, mate. How are you?'—and that changes their demeanour.

There is a lot to be said for what we teach and how we teach it. You will not get it out of a book. It needs to be lived experiences that these people need to understand. As I say, medication has its place but it should not be the first thing we dive for and it should not be an excuse: my care is so poor that I have to say, 'Look. They're off the regimen, we have to do something. That is a cop-out.

Senator THORP: Have you ever experienced in other situations other than the one that you have described people being disrespectful to older people—patients or clients?

Mr Oldham : I work in the community and I see other sides of that. You only have a limited time with dementia-specific behaviours in community. The carers that look after them day in, day out, get short with them by their own admission. I was with a client yesterday and his wife broke down and said to me, 'You don't know but you do. You're the only one that talks to me about it. Everybody says, 'You're a bit hard on him.' People see a snapshot of the person, and dementia sufferers are very clever people. They can sometimes hide it. They can be bashing their wife one minute, and you walk in the door: 'G'day, mate. Cuppa tea?' There are a lot of different things in the community and an interim place that is not full blown but not the very early stage is another part of care that should be looked at.

Senator THORP: Which is caring for the carer as well.

Ms Mathers : It is very hard to find that, especially the newbies on the block. Glenn and I were trying to start day respite from my home because I had the room, I had the space. I am chasing up to try and work out how to do that. I was hobbled by (a) the local council, because I was going to have to build some huge new commercial kitchen; and (b) the federal government, because there weren't any licences for that and, even if there were, they would be offered to the current aged-care providers first—I would not hear about it until the other aged-care providers have said, 'No, I can't do that.' I was told that from Mark Butler's office. I was told that I had somewhere between Buckley's and no chance of even trying to provide that interim service where at least we could have a quality day service for these people or the carers that were under stress—

Senator THORP: They could still go to work.

Ms Mathers : They could still go to work. They could still go to medical appointments. They could still go to an anniversary or a birthday party without worrying about this person, because they knew that they were somewhere safe and they were going to be respected.

It is very frustrating as people that want to care to not be able to care. We had an ultimate idea to cover that hole, but no-one in government is interested in covering that hole. There are so many hoops that you have to jump through and, even when you do, it is: 'No, sorry. We're going to offer that somewhere else first.' It is a problem. Nursing homes do not want to take people with problem behaviour dementia because they do not have the resources to cover it.

We were offering an out for that. We were offering a solution, but we just gave up. We have gone down another track now with regard to trying a 24/7 care facility. We are hoping that when the aged care rounds come around at the end of the year maybe we will get a licence. I am starting to believe from all the research that I am doing and all the people that I am talking to: will it happen or won't it? Because we are new to the whole process and everything like that, we are not going to be taken seriously. That in itself is sad, because we have the experience of all these problems across a lot of different fields and we know that the need is there, but we are being hobbled. It is so frustrating and it does make you want to go: 'Damn it. I just give up. I'm just going to crawl into a hole. It's just worth it anymore.' Luckily, we are a little bit more pig-headed than that. We are going to keep fighting.

I am not going to give up because after experiencing the cognitive exacerbation with my multiple sclerosis, I could be there one day. I could be needing it. I want somewhere to go that is going to be quality. I am lucky at the moment: I live with a carer. That is pretty awesome, because at least he will be there and make sure that things are done correctly for me. If I was not, I would be stuck with my dad. I had to call him to task over the way he spoke to my pop. Again, it was carer stress. Dad was working a full-time job. He would call out there or stay out there sometimes if pop was not feeling great. He would have pop up at 2 o'clock in the morning, swearing and cursing at him and calling him for all the filthy old so and sos under the sun. Dad would be out at the back concrete, hosing off sheets or hosing off trousers. I would say to him: 'Just chuck them in the laundry trough; it's all going to the same place.' He made such a big deal about it.

He was anal about the way pop ate: he had to eat with a knife and fork. If I took out meals to pop, I would take him out things that he could eat with a bowl and a spoon or pick up with his hands. But, no, dad was very old school. You had to eat with a knife and fork. So poor old pop struggled and slopped food all down himself and stuff like that, because it was not set up like that. Knowing how people can function—you know, fingers were invented before knives and forks—you can give them food that they can eat and enjoy.

My pop loved fish and chips. He was cut up quite badly at the nursing home one day, because he was fed baked beans. I was walking in through the front doors of the home at the time, when he was tearing into a girl, a new one. Pop never swore in front of women prior to his dementia, but he was saying: 'I'm not eating that f'ing crap. My wife never fed me that in my life.' I just went 'Oi!' from the door and he said, 'Oh, crap it's me granddaughter.' I said to him 'Apologise'. 'No, I won't. I'm not eating that shit.' I said, 'Listen, mate, she's only feeding you what she's been told to feed you; apologise.' And he looked at me, and I just gave him the look. He said: 'I'm sorry.' I said, 'That's all right. Now get your things and I'll butt out to my car.' I took him out. I took him to the local take-away down the road and bought some fish and chips. We took them down to the park, sat them on the table and laid the paper out. I had a bottle of tomato sauce. I put some tomato sauce on the paper and said to him: 'There you go.' He said, 'Won't I need a plate and a knife and fork?' I said, 'Don't be bloody stupid.' And he ate. He just sat there and, with his fingers, he ate.

I used to do that for him when I cared for him at home. I would chuck the fish and chips on the table, because he did love his fish and chips. I would put them on the dining table and he would sit down and he would say: 'Plate and knife and fork?' I would say: 'Don't be so stupid. I'm not washing that that up.'

Senator THORP: You are talking about flexibility, aren't you?

Ms Mathers : Yes, absolutely. And just be with them where they are at, because that is their reality. Help them function where they are at. It is all about letting them function. He still felt okay, because I thought it was okay that he could eat like this. I thought that it was okay that he could get food to his mouth without any trouble, so he felt valued.

Senator THORP: But if you put that into a setting where everyone has to eat at the same time, eat the same thing, shower at the same time, you are going to get people arcing up—like your grandad did.

Ms Mathers : Absolutely; they will fight.

Senator THORP: And the treatment of, 'G'day, mate'—the distraction—is the kind of thing that needs to happen to stop that arcing up and the stress levels rising.

Ms Mathers : Yes.

Mr Oldham : Yes. You do not fix an inflamed situation by inflaming it! You are trying to impose your will on somebody who is already upset. It is much easier to say, 'Come over here, mate'—you know, or whatever the situation calls for. That is the beauty of being a flexible carer and knowing how to deal with people.

Senator THORP: So it is about the right kinds of facilities, staffed by people with the right kinds of personalities and the right kind of training.

Mr Oldham : That's right.

Mrs Dickens : I should imagine that, for those who are being cared for at home, advice for the family members is just as important. I have seen a family out one day, whose dad was having a dementia episode, and they were highly embarrassed and they really inflamed an awful situation—one that should never have occurred—simply because they were stressed and highly embarrassed by his behaviour. So support for families caring at home is just as important.

CHAIR: And also training, mentoring et cetera.

Mrs Dickens : Yes, exactly.

Mr Oldham : I imagine all facilities are in the same boat. You talk about funding. If you have a look at facilities, and what they have to do to get funding—the ACFI fees, how many pads does this one use, and how much of this and that. It is a nightmare to try and organise enough funds for each resident through the ACFIsetting. If facilities had more money, perhaps they would be engendering more care.

CHAIR: We are over time, so I will ask each of you to keep it short, but how do you think the new dementia supplement is going to help? The legislation that passed two weeks ago brings in a new dementia supplement for both ressie care and community care. First, have you looked at that? Second, do you think it is going to be enough?

Mr Oldham : It will depend on how it gets spent and how it gets divvied up—and what is left after bits and pieces are taken out for administration and so forth. By the time that bit trickles down it might be bugger all.

Ms Mathers : Anything is better than nothing, but we really have to look at where we are spending money and where we are putting it.

CHAIR: And how we are spending it.

Ms Mathers : Exactly. You cannot be tying it up in paperwork. You should not have carers pouring over ACFI documentation instead of spending time with residents.

Mrs Dickens : Dementia really should funded on a whole different basis from aged-care. They are palliative, they have different problems and they should be funded differently. It is a growing problem that really needs to be addressed. It is a human rights things as far as I am concerned.

CHAIR: Thank you very much. Your submissions were really very much appreciated.

Mr Oldham : Thank you for the opportunity.

Ms Mathers : Thank you very much for doing this.

CHAIR: Thank you.