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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

CALVERT, Ms Roslyn Ann, Manager, Dementia Tas

[11:54]

CHAIR: Welcome. I understand information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. I invite you to make an opening statement and then we will ask you some questions.

Ms Calvert : I am Manager of Dementia Tas, which is a training business. I just want to bring my knowledge, expertise and current views on practice to the committee. I have a business card for anyone who wants to have a look at it later.

I have worked in the aged-care industry for about 20 years. Over that time, practices have changed and developed, as you would expect, which is nice to know. For 15 years I worked in residential care facilities, and I have worked across all disciplines. I started off working in the kitchen and laundry and doing the cleaning. I then became a carer and then got involved in diversionary therapy, which is now leisure and lifestyle. So I have done a little bit of everything in aged care.

I had a passion for people with dementia and felt that they needed specialised care. So, before I left aged care, I worked my way in a facility to a position of, which I would call, a dementia therapist. Basically, I was the go-to person in that facility for dementia issues and to help out other carers, train staff that I worked with and all of those sorts of things. That worked very well. It was what I called an integrated community. The residential home did not have a secure dementia unit.

I am one of the probably few people who do not believe that people with dementia should be in a separate facility. They are people. We do not put everyone with arthritis in one facility so that it is easier to care for them. I think people with dementia often are misunderstood and some people misunderstand where they are at. A lot of the time they use the BPSD that you talk about—and the topic of this session. A lot of that is communication from people with dementia; it is not something special.

When I finished with aged-care I was a trainer with Alzheimer's Australia for three and half years. That was mostly organising group sessions where workers from homes came and trained. I enjoyed that, as training is my passion. I felt a bit stifled. They were funded, and there were a lot of things that I wanted to do that I was not able to because it was not funded and we had to keep within our funding parameters. So 18 months ago I decided to start my own dementia training business so that I could be more flexible and I could offer the industry that I felt I knew quite well what they needed, which is affordable, practical training. I have been doing that for 18 months and over that time I have delivered training to more than 1,000 care staff in residential care community settings and also family members as well. I do training for family members as well.

I do believe facilities are currently doing the best that they can with what they have got. I do believe that they are underfunded. They are also under staffed, and that is due to funding. I have done dementia care mapping, which is an observational tool to measure the well-being of people with dementia. I have done that in a few homes and have worked successful with some homes to improve their dementia care—doing a pre map, coming up with statistics and then putting some training in place. One home actually advertised all the positions in their secure dementia unit and got staff to apply for those positions. So they just got staff who were interested in working with people with dementia. We did a map six months later. All the new things were not in place. The training had started and some staff had started to work in the area that wanted to work in there. The group well-being of those residents improved by 13 per cent. That was only a tiny bit of improvement but it actually showed in the statistics.

So I know that homes are working very hard to do as much as they can with what they have got, but I do hear stories from staff who often struggle with that perception of time in aged care. Sometimes, though, the time is misconstrued—they say, 'I don't have time to do that.' But if you take time you can make time, and so sometimes it is just people's attitudes or understanding.

While I agree that there are some people who should not work in aged care, there are people who work in all sorts of disciplines who perhaps should not be there. There are policemen who maybe should not be policemen. There are probably politicians who should not be politicians. But there is also a way of moving on people who should not be in care, and that happens—I have seen it happen; they are performance-managed out of the position, basically.

The culture of aged care is changing, but it will take a long time because it is a very entrenched culture. It has moved from the medical model to be a little bit more personal and a little bit custodial. It probably needs to continue to move, and I think that needs to happen through government support.

Aged care facilities also need to become more creative about where they get their funding from, even though they are supposed to be not-for-profit. Their turnover is huge. So we need to be looking at how we can support staff more, how we can increase volunteers more and how we can involve family more, because all those people are very important. Everybody is important in caring for people with dementia.

I am quite pedantic about the language that gets used. In my training sessions I am a bit fussy about that because I think that the language we use actually colours what we think and how we respond to people. So I try to bring a positive spin to people with dementia: that they are not different from you or I. We all have needs; we all have a way of communicating what our needs are. Sometimes people with dementia do that differently. That is one of the biggest things with caring for people with dementia: every single person is different, so there is no one fix for dementia care; it has to be a multiple approach from lots of different avenues.

Senator THORP: If I understand you correctly, you are acknowledging that there is a small proportion—one witness suggested two per cent—of people who get dementia who also have behavioural and other difficulties: the BPSD—

Ms Calvert : The behavioural and psychological symptoms of dementia, as they call it.

Senator THORP: Yes. But it sounded to me a bit like—I am a former school teacher—the overdiagnosis of ADHD which you suspect may be occurring because people do not know how to handle people properly.

Ms Calvert : I think a lot of it is that. I have met a lot of carers in my 20 years, and all the people I meet have good intent but they do not always have good knowledge. Also, carers may not come with specific training around dementia. We are different as people, and so we take on what we know. So, for the majority of carers who are female, they become a mother, and that is not what to do because that is not the type of care that people with dementia need and they know when they are not being treated respectfully or correctly. But just from having my own training business I have seen a difference. I get feedback around differences that that has made for people—to be able to give them some of my experience and some of my knowledge. A lot of it is done through stories.

Yes, there are things that have happened over the 20 years that I wish I had not seen, but I am sure that that will continue because that is life; it happens in all sorts of spheres of our lives. We cannot live in an ideal world, even though I would like to, most of the time. We have to deal with practical issues. I have had family members come to me, and sometimes the view that they get is very small, not a full understanding of what is happening. So, if they come in, and maybe mum is still in here pyjamas and dressing gown, they might ask: 'Why? It's 11 o'clock.' They do not necessarily understand the reason. Most of it is derived from emotions. Having someone with dementia in your family or being the supporter for someone with dementia is highly emotional.

Senator THORP: If you could design the ideal system for dementia care, from early diagnosis and home based care right through to care for someone who may need to be in a full-time residential facility, what would it look like?

Ms Calvert : It would be a model that would be run a bit like hospitality. It would have more hospitality workers and fewer carers. Just to facilitate people to get through their day, it would probably have more specialist dementia workers, with good adequate training but also the right attitude. I think the attitude of workers is the biggest thing. You can train people in how to understand and how to give good care about dementia, but you very often cannot change attitude. So, people would have the right attitude. And it would be ageing in place. I do not believe it is good to remove people from an area or from a facility and put them somewhere else so that their medication can be adjusted or they can be observed or whatever. I do not believe that is the way to go.

So, my ideal fantasy-world facility would be ageing in place, from go to whoa. And it would not just be people with dementia. As I said, the integrated community residential care that I worked in functioned very well. I delivered training to the residents who did not have dementia. While there was resistance to begin with, because we humans are frightened of what we do not understand, and there were a lot of comments like 'Those people should be locked up' and 'They shouldn't be here', after I had worked with people I actually had some of the more vocal residents helping out people with dementia, which is great for them. If you have a lot of people with dementia, they do not necessarily motivate each other, whereas if you have people with dementia and people without dementia and people with different stages of dementia they all have different skills, so they can actually support each other. So that is how it would look, but I do not think it is ever going to happen, because it would take too much money, and it is just not there.

Senator SMITH: This might be a little bit out of scope in terms of what you are most used to, but what observations do you have about younger people who might be suffering with dementia, and how is that different or how is the treatment different?

Ms Calvert : Younger-onset dementia is certainly a growing group of people. I believe they need more support from their GPs, which is another area that residential care also needs more support with. I had an experience of one lady who had moved into residential care. She was in her late 50s. She was not having a good time with settling in. She could not work out why she was there. The staff were amazing with her, but it was about how she was feeling. I got called in as a consultant to see if I could put some strategies in place. I talked to the lady. The thing that was coming across mostly for her was, 'I haven't seen my doctor; I need to see my doctor'. That was repeated several times while I talked to her.

So, that was my recommendation: that her doctor come and visit her. I got a call from the doctor—and I still do not quite believe that I had the conversation with her, but anyway. I said, 'Your patient needs to see you, and she said, 'Well, every time I go in there she's acting up, and I'm not going to go near her while she's like that.' I said to her, 'At any time did you not think that a visit from you might be able to help her make sense of what is happening to her?' And she just said, 'No, I'm not seeing her while she's like that.' If GPs have that attitude, they certainly need more training. It is feedback I get from residential care that GPs often do not get there in a timely fashion, they do not understand pain relief, they do not understand dementia. I think we could do more for people with dementia by giving adequate pain relief and less psychotropic drugs. There is proven research around that too, so that is where we need to be headed as well.

Senator SMITH: In your opening remarks, you mentioned you were seeing larger numbers of younger people with dementia. Why is that?

Ms Calvert : Who knows? It depends who you listen to, but the experts have said it is the lifestyle that the baby boomers led. But how do we know? We will know in probably 50 years time and then we will go, 'Oh yes!' It will be one of those 'aha' moments. But, yes, it is happening.

Senator Smith interjecting

Ms Calvert : No. They discounted that. They did that research years ago and they discounted that. But all sorts of things have been invented while we have been alive, so it could be anything. But it is happening. It is a phenomenon, it is happening and we need to deal with it. It is not a matter of putting everyone in one space to try and deliver that care; it is using what we have got, fixing what we have got, supporting it adequately so that it works for everybody—not just for people with dementia, not just for people with younger onset dementia, but for everybody.

Senator SMITH: In your opening remarks, you made the comment that you did not think it was necessary to separate people with dementia, but in the evidence we often hear about aggressive behaviours, people dealing with stress in very loud ways. Isn't that a bit disturbing and off-putting for those people that might be living without dementia in residential aged-care settings?

Ms Calvert : Yes, it certainly can be, but again education and support help those people understand what is going on. You have to ask yourself why that is occurring. A lot of the time it is because the needs are not being met and because of lack of staffing. In the dementia care mapping, I have seen staff doing an amazing job helping people. At one particular one I did, where it showed it improvement after six months—it was a secure dementia unit—the staff were amazing but, while they were helping people and distracted with other residents and things, there were people with dementia who were not getting their needs met. So, yes, agitation can start. There are a very small number of people who are aggressive and violent for no reason. We do not behave for no reason. You or I would become aggressive or violent for the right reasons. People with dementia often do not have the same social control that we have to be able to stop that. They think what they are doing is okay.

Senator SMITH: So it is very contextual rather than spontaneous?

Ms Calvert : Yes, and what would trigger one person might not trigger another. It depends on our history, our background, our experience. I have difficulty when we talk about people with dementia behaviours. I think we all have behaviours. I have some very interesting behaviours, and I challenge anyone to tell me that they do not. As I say, I do not believe people with dementia are any different. If we can meet the needs, if we can support staff, support the residential facilities now to deliver that good care that people need—and, yes, it does need to be individual but, again, living in a practical world, there needs to be compromise and negotiation around that. But, as I said, most facilities are heading that way now. They understand what it is. They talk about person centred care. They understand what that is. But it is taking a while to deliver it because of the constraints that they find themselves under.

Senator MOORE: Who does your training? You have set up your own private organisation, so who actually comes to get your training?

Ms Calvert : Residential facilities. I go into residential facilities. They invite me in there to do in-house training, because that is most cost-effective for them. So I can train a number of people. I charge a per hour rate. I also have my own training calendar that I put out. If you have a look at my website, you will see that on there. So people from anywhere come to that. They might work in community or they might work in residential care. Sometimes the facilities support them to come along and pay for that. Sometimes workers will pay for themselves and come independently of the organisation where they work. But I will train anyone who will listen to me!

Senator MOORE: We have had a lot of evidence about the need for training, both skills based and attitudinal training. It does seem to be an area that falls off the budget when other things are going through.

Ms Calvert : Yes.

Senator MOORE: You are reliant on organisations actually seeing the worth of that and bringing you in?

Ms Calvert : I am reliant on my convincing the organisations that there is merit to training their staff. As I said, in the facilities I have worked with it has proven that, so they have invited me back to do more training. In one facility I am working with, we put basic training in for all staff, and they have all done that. I am now doing another level of training.

Senator MOORE: That is unit based training? Modules of training?

Ms Calvert : No, it is just hourly, two-hourly or three-hourly sessions. It is whatever the facility can afford. But, when you look at the training that they have to give their staff, it is fire training; it is infection control; it is manual handling; it is the clinical care training—and then dementia and other training are way down the list. That is understandable. We live in a practical world. But it is convincing facilities that training and supporting of staff actually work.

In another facility, I have worked on the floor alongside staff—that was in a smaller, secure dementia unit—and that has worked very well too. Some residents that they had indicated might need to be transferred out to Roy Fagan or to somewhere else to have their medication reviewed actually were able to stay in place because I worked with the staff and suggested some strategies. And sometimes the strategies are very easy, but the staff are so much under stress—they are doing the routine things—that they can miss the obvious, just because they do not expect it, I guess. I am not sure.

Senator MOORE: Some of the questions we have asked today have also been about best practice from people's points of view. There is a different point of view from consumer to carer to worker about what formulates best practice. Do you have models of best practice?

Ms Calvert : My model of best practice is respectful. It is about treating people as people. It is not about labelling them, which is why I have difficulty with a lot of the behavioural and psychological symptoms of dementia: they are labels.

Senator MOORE: All the time.

Ms Calvert : We talk about—well, I don't, but I hear people talk about—people wandering, screaming. It is a label; it does not tell you anything. The person is doing that for a reason, and it is a matter of us finding the reason. So that is my model of care: to treat people as they are, with whatever reality they are in. And that is what I try and impart to workers. There are lots of different models of care out there, but they all have the same—call it what you like.

Senator MOORE: Yes, and it is not easy.

Ms Calvert : No, it is not easy. As I said, you have to have a particular attitude and be a particular person to be able to do it well.

Senator MOORE: We had people talking about being family members, and we have had this across the board in many, many inquiries over many issues about the role of family members and carers and the complexity of the system. Consistently we hear the cry that they are not respected, that they are labelled in exactly the same way in terms of not understanding. In the stuff you do, clearly you need to be a profitable business in terms of making a living. One of the things I am particularly concerned about is how there is support for the families and carers. Do you have any ideas about that?

Ms Calvert : The training I have provided for family members—I actually got a Westpac grant, so I used that, over the last 18 months.

Senator MOORE: You have done training for families?

Ms Calvert : Yes, and I do that for free. In the last one I did, the funding had run out, so I just charged people $5, which covered a cup of tea and coffee. I figure if I volunteer in my own business then I am value-adding to my business—

Senator MOORE: Yes, and it brings back.

Ms Calvert : so I have a vested interest there. So I do a lot of family stuff for free. Facilities also recognise the need to support families and to include families in their care. They have actually paid me to go into facilities and run family education sessions within care facilities.

Senator MOORE: We have not had any evidence about that. I think that is really interesting. Can we get some information from you about work for families? That peer support, which is a model that is used in many areas of need, seems to me to be one of the best, where people can feel understanding.

Ms Calvert : One home I know started a family support group after some education sessions from me. That group is working very well. They also come in and support the staff within the secure dementia unit in that facility.

Senator MOORE: That builds a relationship which is not confrontational.

Ms Calvert : Yes.

Senator MOORE: If there is anything you could give us on that, I would be very interested.

Ms Calvert : Sure.

Senator MOORE: Thank you.

CHAIR: Thank you very much. We have given you some homework. Could you get that to us within the next couple of weeks? That would be really appreciated.

Ms Calvert : We will email that.

CHAIR: Yes, to the secretariat. Thank you very much for your time today.

Proceedings suspended from 12:20 to 13:19