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Standing Committee on Health and Ageing
Dementia: early diagnosis and intervention

CASSIN, Mrs Marilyn, Manager for Programs, Community Care Services, Central Coast Ltd

MCCLOSKEY, Mr Peter, Chief Executive Officer, Community Care Services, Central Coast Ltd


CHAIR: I call upon the representatives from Community Care Services to the give evidence. Although the committee does not require you to speak under oath you should understand these hearings are formal proceedings of the Commonwealth parliament. Giving false or misleading evidence is a serious matter and may be regarded as a contempt of parliament. I invite you to make a brief introductory statement, and then we will open up to questions and answers.

Mr McCloskey : First of all, our apology for not formally submitting our proposal beforehand.

CHAIR: That is okay.

Mr McCloskey : As I have mentioned, at the moment we are going through a Community Care Common Standards review and we had to do our self-assessment, so that took priority. What we would like to bring before the committee this morning are a number of aspects of the delivery of community programs for people with dementia.

Listening this morning, we have heard from the medical side and the residential side, and now we would like to give some evidence on aspects of community development or community delivery. We would like to bring forward evidence on two particular areas. One is the concept of respite when it comes to supporting a carer within a community setting, which is the focus of our formal submission and an article that we have now attached to that submission.

The other is an aspect which is not covered in the formal submission itself. It is what we term the Lone Livers program. It is an aspect of providing community support to people with dementia who live on their own and may have absolutely no other community connection, other than us or a similar provider, or who have limited access to family members. They are basically the two areas that we would really like to promote to the committee today.

CHAIR: Thank you. Is there anything further you wanted to discuss, Mrs Cassin?

Mrs Cassin : Just to add to Peter's introduction, on our Lone Livers program: it is obviously an area we are very passionate about. Our Lone Livers program did not originally start off as the Lone Livers program, but it was affectionately named that by the aged care assessment team and the dementia advisory service. Basically, Lone Livers is our dementia-specific social support program, but it very aptly describes what we do: providing services for people with dementia living alone in the community. As Peter said, there are some people living alone in the community who simply do not have a soul—who do not have anybody—as a first important contact person. This may not be appropriate at this time, but I can give you some illustrations of those very instances where we are caring for somebody without anybody else who could be their first emergency contact person.

CHAIR: I would like to hear some illustrations.

Mrs Cassin : Would that be appropriate?

CHAIR: Yes, certainly.

Mrs Cassin : Good. One particular gentleman lives here on the Central Coast. He was referred to us by the aged care assessment team.

CHAIR: Sorry—can I just ask: how did the aged care assessment team get on to him?

Mrs Cassin : From the police, actually. There had been numerous instances where the police had been called to this little gentleman. He had been accosted by youths in his immediate area who had knocked him down and taken his money. They actually broke into his home on a regular basis. It was very distressing for him, as you can imagine—he does have early to moderate dementia—and the aged care assessment team were called in.

I went out to do a joint assessment with the aged care assessment team—not a normal assessment at his home, because we could not pin him down at home; he walks all over the area and he can be seen in many different areas. He catches the train to Sydney; he is still able to do that. He has a regular routine. I actually did the assessment at the Westpac bank. As you can imagine, it was a matter of catching him at that time. We knew he had a regular routine where he went to the bank to get his daily allowance out, and then we were able to see him. So, from that, we started to put a service in place that would assist him to break down what was happening with the youths that were attacking him.

Putting in place a regular service—mind you, at 7 am because he goes out very early—and a later service in the afternoon when we knew he was going to be home sent a signal to the youths in the area, who were also waiting for him to come home or to catch him in the mornings, that there was a service involved and that he was not simply alone at those times. So, gradually, we built up his confidence in us—that we were there to help him. He is actually under the public guardian and trustee, so the money that he was able to get out of the bank on any given day was cut down so that he was less of a target. With our service now involved, and the money not as readily available to the youths, that has started to improve the situation.

In the time that we have been providing service for this gentleman, we got security screens put on the windows for him and we got some carpet down on his floor for him, through the Public Trustee and Guardian, because he was on bare cement.

There is rather a sad story attached to him. He came to Australia as an English migrant, but he had grown up in an orphanage in England. As I said, he was accosted by youths and was knocked down, and there was nobody to stand up for him. It was a very precarious situation. What has happened now that we have the regular services in place—am and pm—is that he has a framework of care. As I said, basically he is still able to buy his own food and prepare his own food. He is a person that would never be a suitable candidate for an aged care facility, because he roams. You could not tie him down.

CHAIR: That is what he likes to do.

Mrs Cassin : Exactly. And that is his normal routine. He will catch the train down to Sydney, catch a ferry to Manly. He buys a pie and an apple pie. That is his diet when he is out for the day. He has a regular routine that he sticks to. It is working well. And certainly that is what our Lone Livers Program does. It supports somebody living in the community who probably would not do very well in a facility. Obviously there will come a time where there is no longer any option, but for the moment he is being managed well at home. That is the beauty of our Lone Livers Program, that we person-centre the care. Everybody is different. Everyone is an individual, and they will all have different needs. The Lone Livers Program targets the needs of people.

Professor Scott Whyte actually spoke about how some people do better in a facility than being maintained at home. To a certain extent I would say, yes, he is right. But there are also other people who can be maintained at home.

CHAIR: Like this gentleman.

Mrs Cassin : Yes. Very much so. Like this gentleman. You can imagine him going into a facility; it would be a disaster, because he is a loner. As I said, he is not somebody you could tie down to a facility. He is a great example.

CHAIR: Did you have any resistance to you putting these measures in place?

Mrs Cassin : At the beginning it was very foreign to him. We had to try very hard. We have great trust in our staff. They are skilled, professional people and we just sort of hasten slowly. We very much took it slowly at the beginning. We introduced ourselves. I actually picked him up and took him for a coffee. He came with me and we just introduced ourselves as a service and were able to make him understand that we were trying to help him.

There have been many things that have happened over the period of time he has been our client. One of them is that his water main broke in the front yard and was flooding it. He does not have the ability to call a plumber, so our regular workers are keeping an eye on all those things. We contacted a plumber. We have contacted an electrician when he needs it—when his fridge broke down. We manage those services for him and are able to maintain him and protect his quality of life.

I think, for him, his life is at the moment as good as it can be, within the limitations. But there is not a single soul—he is under guardianship—to keep an eye on him other than that. Our service has actually provided him with that framework of care and has increased his ability to live safely in the community.

CHAIR: Thank you. That is very good.

Mr McCloskey : If I may, I would like to add two more aspects to that example. We have approximately seventy clients at any one time who are living alone, but not all are in the situation that Marilyn has described. It has been very interesting. I am a relative newcomer to our organisation—three years, so it is not that new anymore. In this instance, there are a couple of things which I think stand out from an organisational point of view and which, I believe, would be of value to your understanding of the role of community providers.

The very first one relates to where a decision had to be made about an expenditure of funds. Marilyn admitted—this is the story of all stories—that, in one of the attempted break-ins into the house, they came down through the roof and removed tiles and kicked in the ceiling, and then he got water damage in the house. What I have noticed in my three years in the organisation is that we have built up this enormous rapport now with the Guardianship Tribunal and its staff, where there is what I call this mutual trust because we made a decision one day, 'We'll pay for it, and then we'll go to the Guardianship Tribunal.' Marilyn came to me and I said, 'Yes, fine; just get verbal approval from the guardianship board and we'll then pay for it,' because you were not going to get the electrician or the plumber unless they got paid on the day, which is the normal trade system.

So that is just one aspect of this that is now working and working well. We simply ring through, we get verbal approval—it will then get come through in due course. But it means we can say to the electrician, 'We will pay you. We can use our credit card or you can send us the account.' Normally they will send us the account, we pay it and then we just forward it on to the Guardianship Tribunal, who handle it through the normal financial systems. It is just something worth noting, that that is now happening. I do not know if other organisations or other providers do this; we certainly do.

The other side of that, again within this program, is that in theory he is on board under a social support program. Under the HACC services that we have, that is two hours per week, potentially three. The message we want to get across—and to be able to put it on the record today is very good—is that when we are thinking of social support for people under the HACC Program, particularly for people with dementia, we do not work in that routine that we would normally work in with, say, a frailer person, where we might say, 'Three hours per week, and we're taking you shopping.' There is a kind of routine that is required, and that is fine.

Certainly, though, for people with dementia, the program is great, but there has to be a lot more built-in flexibility. Rather than saying, 'Here's funding for 60 people three times per week,' we have to be saying, 'Here is X number of hours of funding,' and as an organisation or as a provider we have to manage that. And we will always live with the pressure of never wanting to say no to the next person but trying to manage it.

I suppose the third point I would make here—and Marilyn used the word several times—is that we 'manage'. That is the other issue: we are not case managers, and I am not proposing or suggesting we should be. That is a specialist area and it has a need. But I do think there is a responsibility. We are moving forward with flexible funding—and we as an organisation are embracing moving forward with the health reforms—but there also has to be an acknowledgement there that we do not just deliver a service. We do not just see a person once and deliver the milk or take them shopping, particularly where people with dementia are concerned. We are in many ways a case manager but not defined as a case manager. We are certainly not provided additional hours within that framework of social support to allow these additional things to happen. How do they happen? They happen. We do it.

Mrs Cassin : We make it happen.

Mr McCloskey : We make it happen. But it would be really good to think there was sufficient funding or resources being provided to not have to then cut back on something else, because somewhere along the line the elastic band will break.

Ms O'NEILL: How much do you draw on the support of volunteers, locals and neighbours to assist you with the case management, frankly, that you are doing?

Mrs Cassin : If there are neighbours or friends or relatives, they are a wonderful resource, and we certainly work with them very closely.

That is not always the case—some people do not have good relationships—but, where possible, we always involve the family, neighbours or friends because, as was said, that is a wonderful support for us as a service provider to be able to speak to a neighbour and say: 'Over the weekend, how have things have been? Have there been any difficulties?' That for us is a wonderful resource if that is available. Certainly, even at the time of assessment, if we have the opportunity then we will always speak to the family, and they will often give really good tips about how we can make this service a success. We always want to set it up for success rather than failure. Anything you can learn about that person is very beneficial indeed.

Just with regard to people with dementia having depression, we believe that the dual diagnosis is more common now. It is our experience that we are seeing people with dementia with, perhaps, some paranoid schizophrenia. Also, we have depression as the major issue with people with dementia, so we are seeing more of that all the time—the dual diagnosis, which obviously brings its own problems.

With regard to CALD clients, just recently I went to an assessment for a lady born in Egypt, of Greek ancestry. Her daughter was there. Her daughter had warned me, 'Mum doesn't want any part of this; she will not be agreeable to anything.' At that assessment, I could not bring out any paperwork at all. I could not go through the normal routine that we do and get signatures and everything; I had to leave all that in the briefcase and just talk to her. We did that, and in the end she was offering me biscuits to take home with me and a big hug. We had to establish the rapport that way. You cannot always go with the traditional method of assessment, particularly with people who are CALD.

Ms O'NEILL: I think you indicated that by going to the Westpac bank! I cannot say how proud I am of the standard of care that is offered by Community Care Services Central Coast Ltd—a fantastic job. Can I ask a question there about a volunteer base. Do you have people who come to you from the community, or do you reach out to the community and say: 'We have great people living in our community, but they need a bit of a hand. Would you like to volunteer to help us?' Do you do that?

Mrs Cassin : We definitely do, and we have 90 active volunteers. Mind you, we always need more, so there is never a time when you can say that you have sufficient, because the need grows, and it always will. Unfortunately, as fast as we run, we never run quite fast enough. But our volunteers are a marvellous group. As I said, some of them have been with us many, many years.

Ms O'NEILL: As I recall, one has been there for 40 years.

Mrs Cassin : Exactly.

Mr McCloskey : Twenty years.

Mrs Cassin : It is 20 years for one of our volunteers; that is right. So they help us enormously with social support, with taking people shopping, with escorted transport, in our dementia day centres, in our head office, in our community visitors scheme and in our social outings. So they help us with a wide range of programs. We do from time to time have volunteer recruitments at shopping centres et cetera. Social support volunteers at the moment are our biggest problem. While we have innumerable volunteers for other programs, those social support volunteers are hard to get at the moment. We realise that we have a lot of competition. There are many organisations—Red Cross, Meals on Wheels, St Vincent de Paul and all the different organisations—that are requiring volunteers. We do realise that it is quite a difficult market, but traditionally we have always had marvellous volunteers. Once we get them, they stay with us, because we very much value their contribution. As I said, I think there are many organisations that are finding the same difficulties of attracting volunteers. Once we attract them we retain them, but it is just that initial attraction.

Mr McCloskey : As an additional comment on volunteering, we have made a policy decision that we do not have our volunteers work within our dementia social support program. We certainly have our volunteers at our day centres.

CHAIR: I was going to ask you about that.

Mr McCloskey : We feel that we should not be putting that responsibility on volunteers. I know some organisations do, and I believe it works well for them, but we have made that decision. It is unless they are in a supported environment. We have three dementia day centres and those centres could not function without volunteers. With our ratio, our aim is one support person per four clients. We have two paid staff. We are invariably requiring, and do get the support of, volunteers. We have the volunteers in a supported environment. We use our volunteers for our general social program, which is taking a frail elderly person shopping or whatever it might be, but we would not use volunteers by themselves to support a person with dementia living on their own.

Ms O'NEILL: That is fantastic and thank you, because my next question was going to be about training, quality and support and that has answered that. So thank you very much, Mr McCloskey. I do want to ask another question because I was actually hoping that we might even be able to go to Memory Lane and see it in action because this is an innovative program on which you have provided us a little bit of information. I would like to get on the public record how you came up with that concept, how it is going and its impact on the carers—and that was an area that you mentioned in your opening comments that you would like to give a commentary on. So it is about opening this up to your commentary on carers and, particularly, Memory Lane.

Mr McCloskey : I might start with a little bit of the background especially from an administrative point of view and then Marilyn will be very much able to tell you a bit more about it from a carer's perspective. The concept came about three years ago. We were getting feedback from our carers indicating that they were looking to do things with their partners, their loved ones with dementia. Taking HACC services, we provide respite. We have three dementia day centres. We have a carer respite program which allows us to put staff into a person's home and allow the carer time out and they can do what they like. When we talk about respite, that is what respite is: separating a couple. We started to get feedback, and a little bit of research was telling us too, about this. We were starting to hear this more and more, that carers wished to do activities with their partners. Some carers are more well educated than others on what is happening and the reality might be there: 'I now may have a limited time. There is a window of opportunity here.' So that window may be limited and so it is: 'In what time we have left together we want to do things together.' Whilst they may appreciate a day centre or residential respite, it is: 'I want to do things with my loved one.'

That got us thinking. There was an opportunity for a funding grant approximately three years ago and Marilyn and I—all enthusiastic we were—applied for that and we got nowhere. But that set out the journey for us to go on. So what we did was convert one of our day centres—and, Deborah, you would be aware of our centre at Woy Woy—for weekends. We had looked at it and said, 'We've got a facility here. We operate five days a week. What can we use it for at weekends? What do we do with this? Here's a community asset and it is just sitting here not being used.' We came up with this idea of running a restaurant. You would appreciate the ambience that that can create. We did it at dusk—again, Deborah, you would appreciate the building—with candle light, music, wine, a three-course meal and couples. We self-funded that although we put in a bit of funding under the CSDE clubs money, so we got a bit of funding for that, and then we became a little bit creative under the definition of the HACC programs, be it respite or social support. We did it on our own for about 12 months and it has now been operating well for 18 months—so much so that we have recently opened another centre, up at Gorokan, and we started our second restaurant two months ago. I am very pleased to say that both restaurants are booked for the months of October and November. We only run them monthly for approximately eight couples. We will provide transport to the facility—to the restaurant, I should say; it is not a facility, it is a restaurant!—and we dress it up and we create it as a restaurant.

Ms O'NEILL: Can you explain why that alternative to a regular restaurant needs to be provided locally in your view?

Mrs Cassin : I am happy to do that. People with dementia are not always comfortable in a mainstream area such as a normal coffee shop or restaurant. They may have some challenging behaviours and the wife or the husband, whatever the case may be, may not feel comfortable taking them out into such a place. We decided we would give them a safe and secure environment, with a staff member to be on hand if they needed help with toileting or any other issues with their eating, so that once again they were somewhere where the carer did not have to worry about other people looking or feeling uncomfortable. So we gave them a venue to come as a couple in their very best gear. We had lovely feedback from a carer who said that it took them back to their courting days and when they were a young married couple getting dressed up and going out. Even laying their clothes out for them both to wear was just such a lovely concept and, as I said, to go into the safe, supportive environment makes all the difference. It can be very challenging for someone with dementia to go out into a public arena. This makes it more comfortable.

Obviously the concept of Memory Lane was to provide such an environment. As Peter said, the carers have said, and it is a powerful statement because they are not quite sure how much time there is, 'Whatever time we have left, we want to do things together.' So with Memory Lane we created a concept where they can come to a safe, supportive environment. We know how exhausting it is for people with dementia to use their cover-up skills. They can do it for a short time, appearing to behave normally, but it absolutely exhausts them.

CHAIR: When you see a short time, are we talking about the small period at a restaurant?

Mrs Cassin : Exactly.

CHAIR: Or are we talking about a couple of days?

Mrs Cassin : No, even in a restaurant or a coffee shop, they may want to get up and wander. There are certain behaviours which, in a public arena, can be emphasised by having a lot of people around them. They are not always comfortable in such an environment. While their carer may speak to them and say, 'Just sit down, everything's all right,' that will not work for very long and that person just does not have the ability to cope in such a public place. In our Memory Lane restaurant that is not the case. It does not matter. If someone wants to wander, so be it. Nobody thinks anything of it. The carer can relax and speak to other people who are in a similar situation. It has been such a success and we get wonderful feedback.

Mr McCloskey : It is very therapeutic for the carer as well.

Mrs Cassin : Very therapeutic.

Ms O'NEILL: It is group support with food.

Mrs Cassin : It is, exactly. They are still accessing the community and mixing with other couples. I might tell you they even exchanged telephone numbers. There is a flow-on effect. So it has been a marvellous concept and has really worked so well.

Mr McCloskey : We have now taken the concept of the Memory Lane restaurant and added to it to say 'Memory Lane, doing things together'. We have taken the concept to the Memory Lane cafe to be the traditional Alzheimer cafe, which has been well researched. We are looking to establish three of those on the coast by Christmas or shortly after. Taking it to the next level, we are calling it the Memory Lane Mateship Club and we are looking to bring together, say, three couples in a people mover and taking them out for the day to wherever they wish to go.

Ms O'NEILL: Support.

Mr McCloskey : But, again, it is that concept now of introducing social activities, targeting the carer but obviously the person with dementia as well, their partner, their loved one. It can be through the social dynamics of a meal. It may be through leisure activities, a healthy lifestyle. The example I use is to say: go down to Ettalong, get the ferry down to Palm Beach, go for a walk down to the RSL and back and go home again, with three couples.

Ms O'NEILL: With support.

Mr McCloskey : With support. It will not be the final, but that is where we are up to with this. Bringing it back to our submission and the emphasis we are making, we call that—we believe that is—respite. Our carers are telling us—

Ms O'NEILL: That is respite.

Mr McCloskey : it is respite. I need a charge. Traditionally the charge was separation, and quite often we are finding that, whilst that is beneficial, it is not the charge the carer is looking for right then. We are looking for different ways where we can invite the carer to be with their loved one. We are now considering the concept at the day centre. Traditionally, 'Oh, no, you don't have a carer come to a day centre.' I suppose we are going to challenge ourselves and say to a carer: 'Do you need a half-hour or one-hour break? Do you need it right now? Why don't you get in the car, if you can, or can you arrange transport, and come to the day centre? Your loved one will be supported and, by the way, we will support you as well.' That is taking that Memory Lane, doing things together, even a further step.

I suppose what we would like to bring forward today is that, in moving forward with the dynamics of where we are going with the HACC program in the future, I think we have to be very careful about the models and the descriptors. They are there now—and historically, for providers: 'That is the descriptor; therefore I must do this. I cannot work outside that descriptor.' I know that in the new Commonwealth contract it is fantastic. We talk about the five per cent of total funding that can go into different programs, so that is the start of where I think we need to move even further. But, even more so when we are thinking of working in the community with people with dementia, we cannot use descriptors. We cannot say: 'This is the program. You are being funded for this.' I think we have got to say: 'We are funding a family unit, a couple, an individual. Holistically, what can we achieve for that person across a spectrum of activity?'

Ms O'NEILL: Wraparound care from a differentiated set of options.

Mr McCloskey : Exactly.

Mrs Cassin : We need to be so flexible to meet people's needs.

CHAIR: And certainly hearing from your carer, saying, 'This is what we want,' is so important.

Mrs Cassin : We have listened to what they have said to us first.

CHAIR: Thank you very much for submitting today. It is much appreciated, especially hearing about the Memory Lane concept, which I think is fantastic. Thank you for your paper that you have submitted as well today. If there is anything further that we did not raise today that we may need to ask you, we may call you. If there is something that you feel should have been raised today and for whatever reason we have not, feel free to feed it through to us. Thank you very much.

Mrs Cassin : Thank you for the opportunity. We really appreciate your time.

Proceedings suspended from 11:18 to 11:34