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Community Affairs References Committee
Care and management of younger and older Australians living with dementia and behavioural and psychiatric symptoms of dementia
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Community Affairs References Committee
Moore, Sen Claire
Boyce, Sen Sue
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Content WindowCommunity Affairs References Committee - 17/12/2013 - Care and management of younger and older Australians living with dementia and behavioural and psychiatric symptoms of dementia
BROWN, Mr Edward James, Private capacity
OSBORNE, Mr Graham, Private capacity
SMITH, Dr Jennifer Gay, Private capacity
WALKER, Ms Angela, Private capacity
WALKER, Mr Maxwell John Henry, Private capacity
CHAIR: I welcome family members of residents who are in Yarriambiack Lodge. We really enjoyed our tour this morning; it was much appreciated and we learnt a lot. We really appreciate your being here. It is by talking to people who have lived experience of interacting with facilities that we learn what is going on, so thank you. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. Do you have any comments on the capacity in which you appear?
Mr Osborne : My wife, Marjorie Evelyn Osborne, is an Alzheimer's patient, and she is over in Wattle Crescent.
Dr Smith : My mother was in Wattle Crescent for a bit over two years, and she died in March.
Mr Brown : My mother is in Wattle. Her name is Dot Brown.
Mr Walker : My wife is over in Wattle.
Ms Walker : I am Ella and Max Walker's daughter-in-law.
CHAIR: Thank you. I invite any of you, or all of you if you want to, to make an opening statement or say a few words and then we will ask you some questions about what you think of the processes here—what is good, what you do not like—and anything else you would like us to bear in mind when we are making our recommendations on the care of dementia patients.
Senator MOORE: Mr Osborne, you look like you are ready to go. You have those papers there.
Mr Osborne : I wondered how much I should prepare. Marj was five years in Bendigo after she was diagnosed with Alzheimer's. The specialists at Horsham recommended that we go to Bendigo because we had two married daughters there and because of the facilities that were offered. So we pulled up stakes and went, and there we met up with Dr Bev Ferris. She was the geriatrician—you may know Bev—and she was excellent. I was Marj's prime carer for the first three years, but then I became aware that the load was getting too much. Bev took Marj into assessment at the Marjorie Phillips Unit, which is part of the Bendigo base, and she was then placed in high care at AdventCare. Now, Bendigo is a big place compared to Warracknabeal, as you would know, with 100,000 there. Staffing was difficult at AdventCare. There were 60 patients there in an open set-up. There was no secure unit. At this stage, Marj was becoming quite agitated and needed a secure unit because of her wanderings. She became intrusive, just for sleep really: if she saw an open door, she would head for the bed and curl up and go to sleep. Anyway, it seemed to me that the method of calming a patient like that was by drugs—and, if you saw the 7.30 report a couple of weeks ago, you would have seen the program on Seroquel. Marj went on to this drug, on of course our doctor's recommendation, and after a time it was noticeable that her mobility was decreasing rapidly both in walking and in handling utensils.
Anyway, the doctors changed. One went on holidays and the new chap came in. He had a bit of a different approach; he reduced the drug. Then the leading psychologist, Dr Machellan from Melbourne, who used to visit there about every six months—she was taking a more reduced dosage—recommended that she be placed in a secure unit. Now, coming from Warracknabeal, where we had lived a lot of our life, we knew that this was available at Wattle and we made an application to come here, which we did. It was the best thing that we ever did because straightaway there was no problem with the wanderings—they have the secure units. I think you have been and seen them. Tell me if I am speaking too much.
CHAIR: No, no; it is great.
Ms Osborne : Anyway, the thing too with Wattle was that they more or less took her off most drugs. She used to be on Aricept, which was for depression. She settled in quickly and you could not find a more caring or compassionate staff—I am sure of that. For a time they had her doing some of the activities you probably saw this morning for mobility, wandering around with the trolley or helping make her bed or folding towels et cetera. The one thing Marge never forgot was music. She was a music teacher, a music specialist, and I would consider listening to her that she never lost the ability to seeing or to remember the words of hymns or community songs. I would think music therapy has a big part to play in the rehab of these people. As you know, we have a singing group there and we join in with that.
Then—I do not know whether I have the right term for this—Marge developed internal truncating where her tummy would be going in and out as though she was breathing too quickly. Alison was able to hook up a link with a geriatrician, Rosie Shea in Ballarat, and by video hook-up we were able to speak to Rosie. She was able to diagnose Marge and put her onto another drug, which did not wipe out the truncating completely but did a lot towards it. It would seem when she investigated further that it was a result of her being almost poisoned by the drugs she had been on. Anyway, that was great. That is something which perhaps in the future could be more done in this field. At the moment I think she is in the final stages of her life. It has been 7½ years and she just shuffles around. I find she relates better to the staff than she does to me or other members of our family. She does not know us now. She has to be fed of course. My son who is in Warwick is here on weekends. We help out that way if we can. Funding and research would be two of the big things. You would be as aware of them as I am. The drug situation through my daughter, who is a double certificate sister, feels that Australia is limited in the amount of drugs they have, their availability and what they can use. Be that as it may, I still think research is going to be a big thing. That is about all I had noted. You may have questions.
CHAIR: Thank you. We will hear from everybody and them will ask you some questions.
Dr Smith : Thank you for the opportunity to address the committee. My experience is based on my mother, who was diagnosed with Alzheimer's disease is in 2007 at the age of 86. She moved in in January 2011 and died here in March this year. This nursing home deserved the gold prize for person-centred care, which they won in 2012, because staff do more than just care from the residents; they make them feel useful, safe, wanted and loved. When a new resident arrives, the staff ask the relatives lots of questions about the person's skills and experiences, likes and dislikes and his or her hobbies prior to the onset of dementia. They then make use of the information to design tasks which the person would like to do, like gardening and cooking, making beds and untangling wool and so on. My mother loved arranging flowers so her job was to arrange the artificial flowers on the tables each day. The staff were disarranged them overnight and get her to do them again the next day.
She also helped with making beds by accompanying a staff member and pushing the trolley. No doubt that slowed things down a bit but she felt useful and it gave her more contact and more activity. Others helped to sell lollies in the shop or to make scones to sell to the staff. These jobs give the residents a reason to get up in the morning and an opportunity to be praised for their work, which is important to all of us. It is rewarding for both the staff and the residents.
The residents in the dementia wing do not spend much time in their bedrooms, except at night. They spend most of their time in the common room, where they have meals, talk to each other, develop friendships, do most of their activities and look out for each other. I have a lovely picture of mum, towards the end, lying on a couch with one of the other residents holding up a book for her to look at.
The staff in the dementia wing have no nurses station. It was taken away a couple of years ago. They share the common room with the residents, so they are constantly part of the group. There is a television in each person's bedroom, but it is very rarely watched. Most dementia patients have difficulty following TV programs. There was a large TV in the common room when my mother first came here, but once the Montessori method was introduced, in about June 2011, it was found to be unnecessary. They took it out and put a small TV in an old-fashioned cabinet in the TV lounge, but that is still rarely used. So all the TVs in the bedrooms could be largely dispensed with or made an optional extra for somebody who really likes it. It is different for the people with physical ailments, because a lot of them would like watching their own TV. But with dementia they do not.
The activates that require participation are much better than passive watching of things. The best activities seem to be singing, dancing, group games, such as quoits, or group reading, in which they go around a circle taking turns reading. Animals, either real or toys, are also good because they are something to care for. They have a toy cat in there that is life-size and it purrs and meows. It does things even when you are not touching it. I have seen people try to feed it biscuits, because they think it is real—and it is just as good as a real one.
The staff always treat the residents as people with the ability to contribute in some way, no matter how small. They allow them to choose their meals, by serving them from a bain-marie. They soothe a temper tantrum by asking the resident to give them, the staff member, a hand massage. So rather than the staff member doing it to the resident it is the other way around. They show a lot of affection to the residents. They hug them and give them a cuddle when they are feeling down and teary.
In summary, the important aspects that make Yarriambiack Lodge better for dementia patients are, one, making the residents feel useful, two, encouraging them to spend their days in a group, as they would in a family, three, enabling them to participate in domestic activities and hobbies, rather than passively watching, and, four, having caring, constant and loving staff.
Mr Brown : My mum has been committed for nearly 12 months now. She was always a mum. She had six children. She lived with one of my brothers right up until his death, not long after she got dementia. She drove a care probably 12 months before we put her in here. It was one Sunday—we always knew that there was something not right. When we got her diagnosed we looked at a couple of places. Mum was always one of those people who love communication. She always wanted to be with people. We looked here and at Natimuk. We were lucky to get in here. She has chummed up with a lady there named Pat and now they are like sisters. It is just magic to come over. When you come over it is just like going home. The staff are just so great. They are part of a whole family. I find I now do not visit mum any more; I visit the whole lot of them in there. You walk around and they all touch you or ask things. It is just part of the visit.
Like all things, she wants to go home. She gets to the door and then she wants to go back again. Also, there are outdoor activities. They are just not sitting there. We have found it really good taking her off the drugs she was on. She still remembers my two sisters and I, which is great, but we know that will change. She does not remember any of her grandkids, but they all visit her.
On Sunday, she told me, the first thing she did when she got up at 7 o'clock was feed the chooks—which was part of mum's life. And that is part of it: we find she is not just put in a room or sitting in a chair; she has activities. When we come over she is rolling up wool, or they have folded serviettes. She is so proud that she has done that. Every time you go there she wants to get you a cup of tea, just like at home; and the staff are just great—whether it is there or not, they will go out of their way to be with you and that sort of thing.
It is just about moving on because, really, it is only that part of the mind has gone. So often we just lock them up and forget about them. It is a sickness, we know, but it is not a sickness in their body—they are still human and part of our lives. To see the activities that they do out there is great. And, as I said, the staff are just magic: as soon as you walk in all of them will greet you and they keep you informed about what is going on. The residents love them. I think mum knows everybody's name. In her own way she has always been very demanding, and she will say to them, 'Have you met Ted' or 'How about a cup of tea' and this sort of thing, and there is no nastiness—they never snap or anything; it is just a smile.
The other thing is the activities they have with the school, the kindergarten. They take them down to see the little ones—her and Pat, who I know, and one of the other ladies—and as soon as you get here she will tell you all about the day that she has had with the kids. Apparently, on the first time she went there, one little fella came up and wanted to give her a kiss; she let him, and she tells you about that all the time. Now she has a photo of this little bloke, although she doesn't know his name. But having the interaction with others outside, and their families, I think is a magic process—the garden, the chooks, just everything. The other day I brought over some little yellow ducks and it was just magic, a great afternoon.
As I said, they have still got feelings. I think that is one of the things we have to remember—they are still human beings, they are still part of our families. We have just become a bigger family now. As I said, having them off drugs is better. She is very proud of her room, too; it is private, she can take you in there. She loves it in the lolly shop, which is another thing—making the brain work. Just everything about it is a pleasure.
CHAIR: Thank you. Mr Walker?
Mr Walker : I think you people have pretty well covered everything! My wife has been here for about six months. She has hereditary dementia. She is a bit different to Ted's mother. She is a bit more private; always has been. I find it very difficult to speak about it, actually.
CHAIR: Mr Walker, if you want to take a break or if you don't want to talk, that is fine.
Mr Walker : I have to get over this. I cared for her for about four years. I just couldn't do it any longer. It is magic here. I couldn't wish for any better place for her, really, other than home. That is about all I can say, I am sorry. I might answer questions better.
Ms Walker : She had to go to Stawell first. It was pretty difficult there; she did not really settle. As we said, she has been a pretty private person. She did not manage very well there, but being here has made a big difference. We knew this was the best place for her to be, because we have heard such good reports. We were so lucky to get her in here, really. The other choice, which would have been easier for Max, would have been to have her in Dimboola, but we just know that that would not have been the care that she needed, even though it would have meant he could have been there more often. It is really, at the end of the day, about how she benefits, not how we benefit.
I think the other thing that has made a big difference is getting her off all the medications, because I think they overmedicate. On my personal side of things, I think education is key. We have to train the people looking after these residents in how it should be managed, because, as Ted said, they are people; they just have a different need. We need to educate people in what needs to happen for them.
CHAIR: So what are the key things here that make the difference?
Ms Walker : It is person centred. They have chooks in there, which they did not have before Ella came. She loves chooks, and so does Ted's mother. For Ella that was a big part of her life. She had 800 chooks or something at one stage, didn't she? So she was massively into chooks, and they got the chooks there, and she was a gardener. They let her participate in what she wants to participate in. She has never been a person who would sing, join in bingo and things like that, but she loves her church, so they have that, and that can be at any time of the day. If she says she wants to go to church, they can organise it for her at that time. So it is person centred. We have been to visit other people in other facilities and seen how it is, and they are all just sitting around in a big common room with nothing happening. I think that is the difference: the staff actually interact a lot more with them, and it is about what they want to do. Everybody wants to feel needed and loved, and that gives them the capacity to do that.
Senator BOYCE: Thank you, everyone. Dr Smith, are you a medical doctor?
Dr Smith : No, a statistician.
Senator BOYCE: You could be very useful to us in this inquiry, because we do not even have real figures in a lot of the areas of aged care and dementia. You all spoke, I think, about looking after your mother or wife, I think, at home and then realising you had to go to the next stage. Could any of you talk about what the trigger was. What made you know that now it had to happen?
Mr Brown : She was always a very proud lady, and the hair would not be done or things around the house would not be done. She started to forget things, and even in her cleanliness things were not the same. She was always a very proud lady.
Senator BOYCE: She was living alone at that stage?
Mr Brown : She was living with my brother at the time, and when we would go there he was trying to cope with her and cover for her, because he had lived there for 63 years with her; he was unmarried. I suppose when you live in a place—we would call in and see her and we would notice things that were not happening. She got sick one Sunday night and had medical care. I said to the doctors in Horsham, 'Could you please do an assessment,' and she never, ever went home after that. I was fortunate enough, as I said, to get her into here, but it was just a slow deterioration. You try to care for them at home and try to do things. But, as I said, she was still driving and walking over to the sisters who used to live at the back of her. But you could just see it in your own mind, and it was starting to deteriorate. Then we brought her in here, and I think she will outlive us all now with the care. It has made such a difference.
Dr Smith : The trigger for us was when mum forgot who my father was. He had been looking after her since she had been diagnosed, for about four years. We lived in the same town. She would get frightened of the strange man in the house at night, which was Dad. She got scared and she was trying to get out in the middle of the night. This was in the last two weeks before she came in. She had been gradually deteriorating. She was frightened and was trying to get out. I had to sleep in the bed with her for the last four nights at home because she was scared and angry. She got angrier and angrier as time went on. She was picking on Dad and squabbling. She had a bad temper. Before that she had not been like that. This was just for the last few months. We got her in here for respite and she stayed in the same room until she died. She did not have to move, which was just wonderful.
CHAIR: Mr Osborne, would you like to comment?
Mr Osborne : I think the trigger would have been Dr Ferris, who was our unit manager. Bev used to call fairly regularly. I think she could see the workload. I was doing practically everything—toileting, showering, dressing. Perhaps lifting was thing. She had to be lifted into bed. The family said to Dad, 'If you don't make a move, we don't know who's going to go first—you or Mum.' Dr Ferris's recommendation amounts to being the trigger. We were very happy for that to happen at that stage.
Senator BOYCE: Were you receiving community care packages in the home?
Mr Osborne : We got Meals on Wheels. Is that what you mean?
Senator BOYCE: There is the Extended Aged Care at Home package, EACH, and there is another one which is an extended one for people who have been diagnosed with some sort of dementia.
Mr Osborne : No, it was mainly the ones I just mentioned.
Senator BOYCE: Meals on Wheels. Was anyone coming to do cleaning or things like that?
Mr Osborne : Yes. That was through the shire, as I recall.
Senator BOYCE: That would have been HACC.
Mr Osborne : Yes. Now I am with you.
CHAIR: There are two. You can get an aged-care package, which is essentially in the home, the community package, or HACC, Home and Community Care.
Senator BOYCE: What about others?
Mr Brown : No, my mother never got anything like that. In fact, we tried to organise Meals on Wheels, but she was the sort of lady who would never accept that. In her mind, she could still cope.
Senator BOYCE: We have had evidence that people would stay at home longer sometimes if there were more care available for them to stay at home and for the carer to get a break as well. Do any of you have comments on that?
Mr Walker : As Andy said, I cared for Ella until she came in here, but I had a little bit of time away, which was probably the catalyst to having her assessed. But we never had any help because she just would not have anybody else in the house.
Senator BOYCE: That is quite common.
Mr Walker : I feel the same about me, actually. Perhaps, if I had not been in hospital for a while, I could have coped a bit longer, but it got that way that—
Ms Walker : It was probably the coping that put you in hospital, in a lot of respects.
Mr Walker : Perhaps.
Ms Walker : You were not sleeping. You told me that you had not been out of your clothes in four days because you just could not sleep. The packages that they could have offered might not have helped anyway because the night-time was worst. There was the aggression too, because she was reasonably aggressive at times.
Mr Walker : Not with me. She was with other members of the family—the kids—a little bit, but she really was not too bad. It is pretty hard, when somebody is running the place for years, for anybody else to come in and do anything that satisfies them.
Ms Walker : As we said, she is private so she would not have accepted it in any way. We did try to broach it one other time, because Max was sick late last year. He had a bit of a medical issue and was quite sick for a little while, so we knew it would be crisis management. That is how it would be and that is how it was.
Mr Walker : I did not come back as well as I thought I could and we had to do something. The family thought this was the best thing and I am certain it was, in the end; the care here is just absolutely marvellous.
Dr Smith : For elderly people who live on their own who do not have a carer, I do not know from personal experience but I have heard people say that they do so much better when they are in care; they have somebody to interact with all the time, somebody to talk to, and they improve quite a lot, coming in. So living at home, no matter how many packages you have, with dementia, it can still be not as good.
Senator BOYCE: Social isolation can be an issue, that is right.
Mr Walker : I feel it is a bit hard with dementia. I do not know anything about it, to be quite honest, only my own experience, but every dementia patient is different. They have different cycles of remembering and being able to do—like Ella can do for herself, and she still does. There is no problem with that. It is just that the mind seems to go round and round. At one stage she did not know who I was, but by the end of the day everything was right again. It seems to be slightly different but, as I said, I do not know much about it. There is only one case I know about.
Senator MOORE: I am interested in seeing whether any of your think the system should change in any way, because you all have had experiences working through it and many of you have gone through different levels, trying to come up to where you are now. I am just wondering whether anyone has any comments about how things could be different—your own experience and what support you got, and what changes could happen as opposed to should happen.
Dr Smith : Do you mean in the community or in the nursing home?
Senator MOORE: Anything. The kinds of things all of us face vary in terms of our family, our own circumstances, but just from what you had to go through whether anything could change in the care, in the community, in the process of diagnosis.
Mr Brown : To me, looking at a place like this, it would change my mind dramatically. One of the biggest fears was—I was born and bred in Dimboola, where my mum lived all her life.
Senator MOORE: And that is about an hour away.
Mr Brown : Yes. I was fairly involved. My wife used to work at the hospital there and friends did, and some of the things that happened I used to think, 'God, I wouldn't want to end up there.' But once we came here, as I said, it is just like a family. If you go back to education, the side of training people to realise they are not people who sit in the chair all day or lay down, that just part of the brain is dead—they still want to do things. They still want to fold the tablecloth—
Senator MOORE: Make a bed.
Mr Brown : make a bed, change flowers, go out and feed the chooks. Just those little things. Every time we come, we get a guided tour—I could tell you just about every leaf there is around here. It is activities. I think the more we get places like this, that will change people's attitudes—because a lot of people do keep their mums at home. And if I had to put my mum into Dim—and I am not criticising it now, it might change, but in those days we would have kept her home a lot longer, because we knew that that would not have suited her. So we are changing, and that is the beauty of it. They have not had a stroke, they have not had a heart attack, they have just lost something—but they are still people. They have still got to be loved. As I said, we walk in there now and they are all part of our family in there. They all touch you, or smile, and that is the beauty of a place like this. I think that will change people's attitudes about keeping them home longer and longer. And as I said, I hope I never have to with my wife, or she with me, but I have already booked my room here if I have to come! And I think that is the thing: to get it out there and let people see what we are doing with this side of health. I think it would make a lot of husbands and families say, 'Right, it is time to put them somewhere like this', and be a lot happier.
Senator MOORE: And take away some of the fear.
Mr Brown : Yes. Because when they are home, and they wander—my brother sat up in a chair for years. We did not realise that he would never sleep. He would sit up in the chair worrying about mum, but he would never tell us because he knew jolly well we would move quicker than we did. So that is the way I feel—that the more we put it out there and show these sorts of models, and we get more and more experience like this place, I think the whole framework about dementia will change, and we will love them more and more and more, I think.
Ms Walker : I think the package has certainly helped to keep people at home for longer, which is the ideal thing. Everybody wants to be at home. But, as we said, in our case that did not work because it would not have been allowed to work. But I don't know whether there are other things that they could offer, maybe, so that they could be at home for longer, if people were willing. And I certainly think in the case of medications, there needs to be perhaps more education not only with staff but also with doctors about what medications have effect, because there are so many out there. You have got to wonder about the interactions with medications. I'm probably a bit of more of a believer in natural things, and that perhaps you don't need a medication for every single little thing. So that is probably my take on it.
Dr Smith : Some medications my mother's doctor would not give her; I think it was risperidone, I don't know, for depression, or symptoms, or something. But he said it can increase the incidence of falls and so he would not let her have it, unless she was in an institution, where falls could be fixed.
CHAIR: Mr Walker, did you want to say something? You looked like you wanted to say something.
Mr Walker : I was just thinking about what was being said, really. But when Ella went into hospital, for a start she had, well, I don't know how many drugs to quieten her down. It was about the only time ever I seen her get violent. She was still on drugs when she came here. And Alison—it is Alison, isn't it?—
Mrs Fischer : Yes.
Mr Walker : said, 'the first thing we'll do is get rid of them'. And Ella has been different ever since. Luckily, she hadn't been on drugs when she was home and probably it did not take long to break her off, but—
CHAIR: So this is when she was in Stawell, is it, that she was on the drugs?
Mr Walker : When she was in Horsham, and they continued on. She was only in respite in Stawell because we had made application to come here—but you can't just walk in the door sometimes. You have got to wait for a place to come up. And we were lucky enough, with three weeks after she had gone down to Stawell for respite, that there was a place come up here. But I really think, the more people in the industry that can be taught to follow this example the better. Because it is going to be better for everybody—for the patients, if you call them patients, or clients, whatever; and for the families that have been looking after them—because they know that the person is going to be looked after. It is just like being home really.
I will be here if I have to, but I have got other plans.
Senator MOORE: You will be there with Mr Brown. Is that right?
Mr Osborne : One of the things that surprised me, right from the word go, was the testing program. It reminded me of having an IQ test. I felt that it was too objective. You should not just test spatial relations or your mathematics but you should take into account the patient's feelings and thoughts. I think for that reason there has to be a heck of a lot of work done, even to get into the patient's home. We notice things such as the safety aspect of cooking or notice that when Marg answers the telephone she repeats the same thing six times or whatever. That is what struck me. When we went to Bendigo we went to our doctor there. He gave her the same sorts of tests she had had over here at Horsham. He said, 'You are answering these as well as I am.' But of course that was only one side of the coin.
Senator BOYCE: Do you remember what the test was called?
Mr Osborne : No. I suppose having been a teacher I had had a bit to do with IQ tests and the like. It seemed to be heavily loaded for maths, spatial relations, find the missing word. The doctor might say five words and then have a spell for a couple of minutes and then he would ask her to say those words again or it might be a story with a missing word and the doctor asks that question. I still felt that it did not really give the patient a chance to express his or her feelings, and I reckon there needs to be a lot of research into the testing program. Do you agree with that?
Senator MOORE: We have heard that in the whole diagnosis program there are standardised tests which are looking at one aspect but that they fail to pick up the point that Mr Walker made that every single person is different. So as you are going through what is happening, each person is so different. We have heard that.
Mr Osborne : I think that is where our family members first picked it up. Marg would ask the same question six times over the phone.
Senator MOORE: And you knew something was different.
Mr Osborne : She used to get quite angry. She would take the church choir and she would give the same answer to a question when we already had it. When this was pointed to out to her, she did not like being told we already had that answer.
CHAIR: Could some of the techniques such as doing activities that people feel comfortable with be used here at home? There is also an understanding of how people's perceptions change. If you had more help in the home or if others did, even before people were diagnosed, do you think that would help? If the environment was modified, if they were given more support for the things that they want to do, would that help?
Mr Osborne : It would if the patient agreed to having somebody else in the home. That is what we found out. Also, in a situation like this here, I was on call 24 hours. There were three shifts here of eight hours, and those people come in fresh, with fresh ideas, with fresh energy and with batteries charged to handle the situation.
Dr Smith : The carers get worn out. They do not have the mental energy.
CHAIR: I did not realise the numbers were so high. Seventy per cent of people with some form of dementia are still living in the community. We know the number of people with dementia is going to increase, so obviously we need to make facilities like this. But there will still be a lot of people in the community and a hell of a lot more people looking after them. So how do we help in those circumstances as well? This inquiry is particularly about complex behaviours of people with dementia.
Mr Brown : I think people are a bit embarrassed when their partner gets dementia. I have a couple of friends, elderly gentlemen and their wives, and they have kept them home; and you can just see the pressure on them. Now they have gone into care, but I think it is a stigma. Why should it happen? In our family we never had it; Mum is the first one. But we do not class it as a sickness, we just class it as part of her life that has changed. But a lot of them do. I know if I were to take Mum to our place, my wife just could not handle it. I think it puts a lot of pressure on families. You still love them but, as Graham says, you are there all day, all night, and you are absolutely buggered by the next morning and they are still demanding.
CHAIR: They do not stop.
Mr Brown : Yes. It just does not stop. I think that having more facilities like this is going to help. And it is good to come and see them. You are not putting them in a room. It is still part of our lives, coming here.
CHAIR: So that is probably what is stopping people taking steps earlier: one, the lack of acknowledgement, and two, not having places that they feel comfortable letting their loved ones go to.
Mr Brown : Exactly right. Otherwise we probably would have had Mum here six months earlier.
Senator BOYCE: How did you all find out about this place? Was it something that everybody knows?
Ms Walker : Local talk.
Mr Walker : I have a friend over here—he does not know me most of the time—who has been here for years. He has been around most of the facilities, and they got him here because the family thought it was better here, and they still say it is the best facility that he was ever in. Angie knows a fair bit about these sorts of things, but I would not have had her anywhere else, because this came so highly recommended.
Dr Smith : It was the carers respite coordinator in Horsham that rang around the nursing homes and told us that there was a space here. And it was the district nurses visiting Mum for leg ulcers who said, 'It's time.' Mum had her ACAS assessment the morning she came in here. The same day. And it was at the height of the floods, so the poor ACAS assessor had to get to her place through the flood. It was the people in Horsham who organised it. We would have originally thought of taking her to somewhere in Horsham.
Mr Osborne : I guess we were filled in by two sources. The Warracknabeal Herald, believe it or not, and our friends who were here, of course, because when we moved—over seven years ago—was about when this was just finished, and of course the opening got the big wrap-up and there were open days when all our friends were shown through. The grapevine works in mysterious ways. On top that, something we have not mentioned—and this was a big help to me—was our doctor. Dr Liu at this stage had opened a new surgery and clinic in the heart of Bendigo and he said to me when we left, 'I'll get you to come and have a look through it.' So when we got over there we did. He rang us up and took us and showed us through. Surprisingly there were a lot of Warrack tradesmen working at that stage, doing the carpeting, painting and electrical works. But he had a chap here, Dr Ravi, who had worked with him, and he became our doctor over there. Afterwards, at some time or other, when Marge was deteriorating, Donald rang me and said, 'Look, if you want to come back to Warrack, I'll look after Marge.' I thought that was one of the greatest things that a doctor could say.
But I still think that this is one of the big pluses here at Yarriambiack Lodge: that the hospital and our doctors are in the same grounds and are on call. In Bendigo you would never or very seldom get your own doctor to come out to a nursing home, which would be 10 or 12 kilometres out from the city. It is not that he would not; it is just the fact that there are 100,000 people there. But I do think it is a great thing here that there is a close relationship between the doctors, the staff and the patients.
Senator MOORE: One of the questions that we ask a lot—and we get told about this a lot—is the importance of the GP. Mr Osborne, you have spoken a lot about the personal relationship you had with your doctors. For other families, was the GP really across all the issues that your mum or your partner was having?
Mr Brown : Not really.
Senator MOORE: So you did not find that they were, Mr Brown. Mr Walker?
Mr Walker : We had a fair change of GPs—
Senator MOORE: So you went to a few?
Mr Walker : and that makes it a little bit difficult. They recommended that something be done—
Ms Walker : The memory support clinic—
Mr Walker : Yes, but we were being changed around with our GPs. Our long-time GP just had to retire, and then we had other doctors come—relievers, et cetera. Our new GP is very new to us. He has everything there to check back on her records and he is very good, but there is not the continuity of doctor—
Senator MOORE: That Mr Osborne had?
Mr Walker : Yes. And even he had—is it Dr Liu here?
Mr Osborne : Yes, he is our doctor.
Mr Walker : I think I have met him, but not officially. I know he has treated Ella since she has been here—well, I think he has. The staff have had her to the doctor for a couple of little things, though nothing much. Because he is just there—
Senator MOORE: It is convenient.
Mr Walker : It is just so convenient.
Senator MOORE: Mr Brown, you said no pretty quickly.
Mr Brown : Again, it comes back to that generation. Once upon a time, family doctors lived in the town for all their lives; they got to know them, the old type doctors. But then of course they move. Then again they are very set in their ways. We were pretty lucky; my mum was never really a person who got sick. I do not know how many times she would have been to the doctor in her lifetime. Old Doc Hinchey who lived here all his life and Dr Prior were part of the town and you knew them. But I think after mum had her last kid she would hardly ever have gone to the doctor.
Senator MOORE: That happens a lot.
Mr Brown : So we were very fortunate. I think it is just their attitude. We are probably a different generation; we change doctors here and there like everything, but they did not.
Senator MOORE: Dr Smith, what about your family? What happens so often is that, as we keep saying, the GP is the person and the GP should know about all this stuff, and we rely on the GP. Sometimes it is as if we expect the GP to know everything. But I am interested to know, from your experience, whether the GP was the person who was able to work with you and your mum and your family about what was going on?
Dr Smith : No, not really, because you only see the GP for a short time. We saw a lot more of the district nurses; the nurses had been treating mum for leg ulcers for a couple of years. They were the ones who said, 'It's time,' because mum was not cooperating with the treatment anymore. They could see that it could not go on.
Senator BOYCE: In talking about your wife being involved with the choir, you remind me, Mr Osborne, that we have had evidence about how it can be very difficult for people in the community with dementia to stay involved with the social or community groups—or whatever—that they have been involved in all their life. Can any of you tell us stories about how people withdrew from community groups and why? Now that you have seen what they do here, might there have been ways that could have helped them to stay involved in those groups for longer?
Mr Brown : . It is difficult in the little towns. My mum was always involved in lots of things, but it is like anything—once you drop back in a community group, occasionally they might recognise it but you drop out. It even happens with us. For example, you had friends in Jaycees but you moved on. I think that is just part of human nature. When you are not turning up all the time, one or two will keep in touch with you but the majority does not. As I said, I think it is just part of life. The other thing is that we are all so busy. All the wives work, so you do not go round to nanna's and that sort of thing. There are all those types of things; it is just a different environment.
Mr Osborne : I think that is an advantage, Ted, the small town has in community groups. They are very considerate and would make allowances for a person who was showing a disability to come back into the group, and they would help. That may be an answer to your question, Senator—it may help the patient. But in a large town—for example, Bendigo, where we went—where you would not know a soul for a start, it would be far more difficult, and I think you would have to have had an aged-care or mental health group of 10 or 20 people of their own. That was one thing here—Alison quickly got on to a choir over at Yarriambiack Lodge, and I know Marge sang in it, as did a lot of the other people. So there is for and against it.
Dr Smith : My mother was an artist, and she was able to keep going to the art group right up until about 10 days before she came in here. But it required a lot of understanding on their part because she was losing the brainpower to do the art work, and she would also forget who people were. That is one problem with keeping up groups; you do not know—
Senator BOYCE: Who was supporting her to go and stay there and things?
Dr Smith : Each Saturday morning we would go down the street and have a cup of coffee, and then I would take her to the art group and go back and pick her up later on. But with dementia you lose the conversational abilities and the ability to recognise people, and artwork takes a certain amount of brainpower—particularly the sort of art work mum did—and she was losing that.
I know everybody has been talking about how bad the drugs have been, but mum was only ever on one drug: Aricept. It really helped her a lot for the first nine months. We kept it up because we did not know how bad she would be without it, and it did help her. Before she was diagnosed she was all tearful and stopped doing her artwork, but after two weeks on Aricept she was back to painting again. It lasted for about nine months, and then the disease progressed.
CHAIR: We are just coming up to time. Does anybody else want to make any final comments?
Ms Walker : Ella was supported. She is a very religious person, so she used to go to church every Sunday regularly. That never stopped, did it?
Mr Walker : No.
Ms Walker : It was the same with her bowls. Because she used to have a lot of trouble—though she is a very good bowler—all her friends would just tell her at the time what she needed to do. So they were very supportive and helped her get out and that sort of thing, and they were the only two things that she ever was really—
Mr Walker : That gave me a day off!
CHAIR: That is a good point, too, isn't it?
Mr Walker : Yes.
CHAIR: Keeping contact and social activities also gives carers a break—sometimes.
Mr Walker : She always helped with the catering, until just 12 months ago. She would go down and wash dishes with the girls. She would go to bowls. The girls would take her. They would say, 'It is your turn to bowl,' and she would get on the green, just like that. I wish I could!
Ms Walker : As small communities that is what we do have an advantage with. There are people she has known all her life, so they are very supportive in those sorts of venues.
Mr Walker : They are all helpful.
CHAIR: And they are aware—
Mr Walker : Yes, they are aware of what the problem is. It is not something that jumps up at them today. It has been going on and on.
CHAIR: If you know the person really well, and in a small community you do, you notice the changes.
Mr Walker : Yes, you see those changes coming. I suppose it did. I could see it coming but you hang on and hang on.
Mr Osborne : If casual staff are employed—and I know this was the case in Bendigo; it had to be—I think it is very important that they have some qualification to know how to handle problem people. That can lead to bigger problems. I do not think there would be anyone here who would not have had some training. I guess it is a problem with staffing in all institutions—sickness and holiday times and so on.
Dr Smith : But here they were a lot more stable than in a big—
Mr Osborne : Heavens, yes.
Mr Brown : Here they were always doing courses and keeping up with what is going on. Some of the girls have even gone back to do the nurses training.
Senator MOORE: That kind of knowledge adds to the atmosphere, doesn't it?
Mr Brown : Yes. They are just so happy because the staff calls them by their first name. It is not 'Mrs'. Some days they laugh and joke with them. It is just great.
CHAIR: A good atmosphere.
Mr Brown : Yes, and I think that makes them feel better.
Dr Smith : The staff seem to like working in the dementia wing more than the others.
Mr Brown : That is right.
Dr Smith : Because you could see the improvement in the residents. It is rehabilitation they are doing here, not just caring. It is actually making them better than when they came in.
Mr Osborne : You folk would know as well as anyone that we need bucketsful of money put into mental health, because it is not going to go away, it is going to get worse as people age. We hear that all the time on the news. When we think back, we probably looked after gran and there might have been, as someone said, a bit of a social stigma about it, but that is not going to happen now.
Senator BOYCE: We all have a vested interest here in getting this right, Mr Osborne!
Mr Walker : The big thing is that we are living longer.
Senator MOORE: We have taken your advice, Mr Osborne, that what you want is bucketsful of money!
Mr Walker : At one time you were getting pretty old at 60, and although these things might have been coming they did not materialise. Now—I am a little bit past 60!—and these things have time to mature. It is something that has to be looked at. I know it is all very well to say we need buckets of money, but there is only so much money to go around. It has to be put in the right place to do the best for what you have. I would like to see a heap of money come here to expand this and keep it going, but we can't be too greedy, I suppose!
Dr Smith : The care packages in the community that you talked about are probably good for people with physical ailments, but they are not of that much use for the mental problems. What we need is more institutional care for dementia, but reproduce Warracknabeal all over Australia.
Mr Walker : We are hoping that is happening, Jennifer. I am not going to call your doctor, because I know your father! He has forgotten me, I think, but I have known him for a long time. But that is what we need, simply because we are living longer and it gives these things more chance to mature in people. Perhaps I should not be here, really—I want to live a bit longer, they tell me!
Senator MOORE: We all have our time.
Mr Brown : Do they know what causes it? That is the problem.
CHAIR: They are still working on it. They are getting closer. They are doing some pretty good work.
Mr Brown : We have looked right back, and mum is the first one in our family who has had it.
Senator BOYCE: But, as Max points out, perhaps like prostate cancer, people were dying before the worst effects became obvious.
Mr Brown : And I am sure in the olden days they did keep them at home. I can remember as a kid and gran or grandpa would be out the back or kept at home, whereas now it is more and more into the public domain. And that is what we need to do.
Mr Walker : Yes, that is sort of what I was saying: we are living longer. But Ella's mother was only 65 and she had dementia then. Ella has only been really bad for a few years and she is 80.
Senator MOORE: The research is happening all over the world.
Mr Walker : We still don't know; it is in the family.
Senator BOYCE: As you said, there are different types of dementia as well.
Mr Walker : Ella's mother died at 65 and the doctors just said, 'Oh well, she's got dementia'—but she did have a slight accident and have a brain haemorrhage, and that took her. That was probably a good thing, in a way. It is hard to say, but it was probably a good thing in her case because she got violent with her dementia. That is how she had the accident: she fell over.
CHAIR: Thank you very much. It was really helpful and informative information. As I said at the beginning, it is only through hearing people's actual experiences that we learn and can base our recommendations on people's real-life experiences and recommendations. Thank you very much. I know it is really tough. This committee is called 'Community Affairs' for the reason that we cover health, aged care, disabilities—so we get to hear a lot of people's personal accounts. I remember one lady telling me the year before last that I am not to call them 'stories', that I should call them 'accounts' and 'experiences'—because they are not 'stories'; they are actual people's lived lives. So I try to keep calling them 'accounts' or 'experiences' because it is people's lived lives. It takes a lot of courage to tell us about those experiences, so thank you very much. I thank all the witnesses today, the secretariat, Hansard and Broadcasting.
Committee adjourned at 12:55