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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

HUNT, Mr Rodney John, Private capacity

[14:58]

CHAIR: Welcome. I would like to invite you to make an opening statement and then we will ask you some questions.

Mr Hunt : Thank you for the opportunity to address the committee. I am a consultant providing services to businesses and not-for-profit organisations, assisting clients to improve their internal operations and their relationships with other organisations. I have provided services to a number of aged-care organisations. I have got a diverse background, having been a teacher originally, a union official, a public relations consultant, an aged-care industry body official and having held a number of positions with St Ann's Homes in Tasmania. My most recent aged-care experience is as Deputy CEO of St Ann's Homes, a position I left voluntarily in November 2012 to establish a consultancy business with my partner.

I do not have medical qualifications but I do have experience in running an aged-care organisation. I should probably also declare that my late stepfather was a resident of both the Roy Fagan Centre and later ADARDS, where he died in 2002. In terms of other commercial disclosures I should indicate that I have a number of contractual arrangements to provide services to the aged and community care industry body in Tasmania, which is ACST. I also have a blog called 'Ideasinagedandcommunitycare.blogspot.com.au' in which I sometimes write about dementia, support services available for people with dementia, the experience of people caring for people with dementia and many other aged-care and ageing related issues. So that is an introduction as to who I am.

In terms of my views, I think that Australians spend very little time thinking about aged-care until it is a personal issue for them—either as someone who is faced with the task of finding care for a parent in crisis or finding some level of support for themselves. I do not think that, as a community, we consider or discuss aged-care much at all. Like most Western societies, we celebrate youth and we are encouraged to—and many of us do—pursue everlasting youth.

Senator THORP: With varying degrees of success!

CHAIR: Are you going to tell us the secret?

Mr Hunt : Absolutely! Getting old is not well understood. We do not prepare ourselves for it, other than financially—and not everyone does that very well. On my blog I have been critical of the lack of a national conversation about aged-care, in particular what sort of system we want, how we should pay for it and how much we as a society and a nation are prepared to pay for it. On that basis, I welcome this inquiry as a contribution to this conversation.

Given my views and my experience in aged-care, and with providers of aged and community care, I would make the following points about caring for people with dementia. There is a great deal of fear and apprehension about dementia in our community. This arises from a general lack of knowledge about the conditions that cause dementia, the nature of the condition and its symptoms. I am aware that people really do not know how to respond to people who are in the early stages of dementia but are still living in the community, whether independently or not. They find that difficult. I am aware of a friend of mine, who has just been diagnosed with dementia. Other friends have asked me how they should respond to him, how they should treat him. But what I think tends to happen is that the fear and apprehension causes people to isolate people who suffer from dementia and those who care for them. So, in actual fact, what is likely to happen is that people will cut off contact.

In rural areas, I have heard it said that the issue 'will be dealt with on the farm' or 'in the family' and that people who have dementia have been withdrawn from community events, and the normal patterns of rural life, to save embarrassment and shame—so-called 'shame', I should say.

Online resources are important in these circumstances, to give people support, but people need to know that these resources exist. I recently saw a call by the House of Representatives Standing Committee on Health and Ageing for GPs to be given more education about dementia. I think we all need to know more about it so we can respond appropriately and assist people who suffer from the condition and help them to live independently for as long as possible.

In terms of the current state of residential care for people with dementia I make the following points. I do not think that we spend enough on residential care as a society. Choices often have to be made by administrators about staffing levels, and some family members are still shocked to discover that residential care is not like an intensive care unit. I think every administrator of aged-care facilities would like to increase staffing levels, but organisations need to break even unless they have other sources of income. Having said that, in my experience, care for people with dementia is generally a lot less regimented than in was; it is a lot gentler than it was and more attuned to the progress and rhythms of the disease.

I have been able to read some of the submissions on the committee website and I have seen the references to people being allowed to sleep in and get up when they are ready, rather than getting up by a certain time. I think that that practice was introduced at St Ann's while I was there, so it was sometime between 2006 and 2013. I would say that is generally a fairly standard thing now, rather than having people up and ready by a certain time of day, although we did receive at St Ann's a number of comments from family members who were not happy about the fact that their family members were not yet prepared for the day—so they had not been showered, had not been dressed—by the time that their family members might have called in for an impromptu or unannounced visit. That is the other side of the coin, I guess.

Previously closed units have been opened. This occurred at St Ann's, Old Beach, where there was a locked secure unit which was opened because the people there were assessed to be not at risk of wandering and therefore there was no need for it to be a secure unit. It was an important step at St Ann's, Old Beach, but it was not universally accepted by the community, by the family members of people who were in that unit. Some of them felt that this was a danger—that they might wander and they might wander onto a highway nearby.

St Ann's also decided to centralise care, for those who needed a secure unit, to a facility known as Annie's House at the Davey Street campus of St Ann's. That unit was designed, equipped and staffed to reduce anxiety and agitation for people suffering from dementia. Everyone who worked at St Ann's had the responsibility to make sure that they delivered that sort of care when they were in that unit. For example, it was an expectation of the CEO that, if she was in the unit and became engaged in a conversation with a resident, she would respond in an appropriate manner and assist staff who normally work on the unit to deliver that sort of philosophy and that sort of care.

Greater attention is given to selecting appropriate staff for specialist dementia units. In fact, at St Ann's in the last year there was a selection process which everyone was required to go through, even people who were working in the dementia unit and had been working there for some time. I think that was very successful in finding people that were suitable to work in the unit. But I also have to say that there are some quite experienced aged-care staff who still fear working with people who have dementia.

More attention is paid these days to design and furnishing of dementia units, but refurbishment can be expensive and slow to occur.

I was able to hear a little bit of the discussion about food while I was here. I know that more attention is paid now to having appropriate food, to making sure that residents do not miss out on the sight and the aroma of food. When I first went to St Ann's, every resident of the dementia unit received a plated-up meal from the kitchen which came in via a trolley, and everyone's meal was tagged. For example, if I was there, the staff would know that my meal was tagged and it would be delivered to me. That practice was done away with and we moved to a practice of delivering and plating up food on the unit, as an indication of the fact that it was beneficial for people to see the food being prepared and dished up. People could also say, 'I want a bit more,' or they could indicate that they wanted a bit more. There is also more attention paid to having more food options—so having food available in an easily consumable way.

In my experience there is also strong industry support for reducing the use of sedatives in the treatment of dementia, and some of the work that has gone on with the University of Tasmania, with the RedUSe program, has been very important. To make sure that happens we need appropriate design of areas where people with dementia are housed, we need good staffing levels and we need good training for staff. It is important, I think, that there is a diversity of care options available. We should resist the 'one size fits all' solution or models that do not acknowledge that there may be more than one way to care for people. I think competition in care models can be good but I also think that there is a need to ensure that resources are not wasted, because the resources in the aged-care area are scarce. People spending a lot of money developing care models or facilities that do not get a strong response from consumers can mean that those resources are not well spent.

One of the principles of the Living Longer. Living Better reforms is putting the consumer in charge through consumer directed care. This will challenge providers but it should have very positive outcomes for those being cared for. For those people who are not able to communicate, personal representatives will need to make more choices about the care being received.

I would also make the point that we always hear lots of calls for extra funding for research into conditions such as dementia. I think that until we are prepared to pay more tax the bucket is relatively finite and that people who make those calls for greater funding of research need to recognise that it is in some sense or in some way directing money away from care for people who currently suffer from dementia.

I would be very happy to expand on any of those points or to answer any questions that committee members have and I hope that my contribution has been useful to your deliberations.

CHAIR: Thank you, and over to Senator Thorp.

Senator THORP: If I am understanding you correctly, Rod, you are seeing changes occur in the aged-care sector around the care and management of people living with dementia and it sounds like those changes are heading in the right direction. How far along are we though?

Mr Hunt : I guess, because we do not know enough about the disease itself and we do not know how far we are going to be able to get in the future, it is hard to answer that question. I certainly think there was progress during the time that I was involved at St Ann's. I note, for example, the introduction of people being allowed—and it sounds terrible but I guess that is effectively the case—to get up when they want to get up rather than having a knock on the door and being told, 'It's time to get up because breakfast is in half an hour and we need to have you showered and dressed and ready to go for breakfast.' That was introduced while I was there, so too with people having meals in their rooms when they were ready to get up, and the opening of the unit at Old Beach happened. I would probably make this comment about aged care. Aged care—and this is probably why there is not a national conversation about it—is quite removed from general community life. Older people are in facilities that can be quite remote from local communities—I do not mean physically but I mean in terms of their interaction with communities—and within those remote—if I can call them that—facilities there are secure units, which, in terms of the ideal that I would like to see, we would be better at but I cannot give any silver bullets as to how we can be better at it though.

Senator THORP: Do you think it is reasonable to say this about some of the principles of models of care that you would have seen at Adards when your stepfather was there? Do you think it is fair to say that some of those have been incorporated into the more mainstream treatment of patients with dementia in other facilities?

Mr Hunt : Yes, I do. For example, I think the bus stop has been mentioned a number of times, and there was a bus stop at St Ann's as well in the secure garden. The mention I made about food being taken in, whilst it is not prepared in the kitchen, St Ann's has a commercial kitchen on site and St Ann's also used the cook-chill method, so it is not freshly cooked in the unit. That is a principle that are similar to Adards. Also the intention to make sure that people are not agitated or anxious and the provision of means by which people can be diverted from increasing anxiety I think reflects that Adards approach, but I would say it is generally accepted now rather than just happening at Adards.

Senator THORP: Over all the facilities?

Mr Hunt : My view is that it varies. There is a great diversity in care models and I think that is probably a good thing. Having said that, if you are in a rural and remote community and there is a care model which may not be suitable for you then to some extent it is a bit of a lottery as to what you end up with.

Senator THORP: What about the existence of intermediate kind of facilities? If someone is able to live at home with a bit of help from their partner or carer and could stay there for quite sometime if that carer or partner or whoever has access to some respite, do we have enough of those facilities around?

Mr Hunt : I would say probably not, and I think that reflects the general community's lack of understanding and lack of preparation for people getting dementia and then going along the path to having more and more symptoms. From personal experience, my stepfather was given some respite as a facility in the centre of Hobart while he was living with my mother and he found it a very distressing experience. It was not at all what he expected. It certainly did not seem to me to live up to the promises that had been made. I am not sure what sort of impact it would have had on his state of mind given that he was not all that far advanced, certainly not as far as advanced as he became when we had to take him to Roy Fagan.

Senator THORP: I have a couple around complaints. Given that you have been working in an aged-care facility, I imagine you have had first-hand experience of the complaints procedure. What is it like from your perspective?

Mr Hunt : I would say that we found the complaints people to be intrusive, to be pedantic and to be unfair at times. That is in relation to the passage of a complaint, if you like. We found them to be that way initially but, looking back on the complaints system, I think they have got a very difficult job and I have got a lot of respect for the people who have to go in and investigate what has happened in relation to a complaint. My comments about how we found them intrusive, unfair and so on, that was my initial response. My experience with them was that the more I had to do with them the more I recognised their difficult job but also the fair approach they did take. We found it frustrating when, for example, we got a complaint that took a long time to be progressed. We might have received a letter about a complaint that happened to somebody who had already passed away, for example, some months later. When you are asked to correct things in relation to care of someone who has already passed away you are getting into the ridiculous area. But I am conscious that I might have come across as saying that is my view of the complaints people now. It is not. As an administrator when we would first get the phone call or they would turn up unannounced that is how we would respond.

Senator MOORE: I was interested in the complaints. I was also interested in your last point about the research funding, because certainly with the work that we do we get a lot of requests for extensive research funding for issues around dementia. It is one of the major issues for people who visit us, as parliamentarians. They say to us that we have got to do more work in this area. It is my understanding that the money which goes to research is not from the same bucket as that which goes to care. Is your perception that money is being taken from care into research, or is it something that people have told you? Why was that point made so strongly? You are the first person who has made that point.

Mr Hunt : Good. The bucket I am referring to is the consolidated revenue.

Senator MOORE: The big bucket.

Mr Hunt : Yes. If we decide to spend money on defence then we have not got money for aged care.

Senator MOORE: I would be more receptive to that point than taking it off research.

Mr Hunt : There are political operators within the aged care and general ageing field who are very articulate, very well known and very powerful. For example, the National Press Club was addressed by Ita Buttrose in May. She made some comments about the current state of aged care. If you look at the transcript of what she said, it is very difficult to know the basis of her complaints, apart from a reference to some of her own family experience and also to some complaints made by people who went to Alzheimer's Australia—conversations. Obviously, these are people who have issues that they want to and should raise. I felt that the criticisms she made of the aged care system were done to generate a greater urgency for more money to be provided to research into dementia, whereas I am not sure that that is necessarily justified by the state of care of people who have dementia.

Senator MOORE: If you look at the wider discussion with Alzheimer's Australia, there is now an equal issue around improving care for people. Certainly, when we have had discussions with Ita, with Alzheimer's Australia and also with the dementia groups, their concern has been that people have to have good care and models of care. I do take your point. I think the impetus of that particular address was research funding. That was the kind of thing that stimulated your statement.

Mr Hunt : Yes.

Senator MOORE: We have heard a lot today—and it is just a shame that there are always limitations on time—about the Wicking centre. Is that an organisation with which you have worked?

Mr Hunt : Not directly. Staff that I managed had a relationship with them. They are certainly making a huge contribution to the Tasmanian aged care community.

Senator MOORE: That degree of a local centre has been beneficial, you believe, to the status of the industry and also to the knowledge base in the area?

Mr Hunt : Absolutely. Similarly, the Menzies Research Institute—

Senator MOORE: A fantastic group.

Mr Hunt : is doing great work—people like Professor David Small. There is work being done on stem cell research. Really important work is being done there on various motor neurone diseases. They have big research teams; they do good work. I have to say that both the University of Tasmania and the Menzies Research Institute are very committed to making sure that they—and this is one of their phrases—'take the gown to the town'. So they are right out there in the community, making sure that not only people working in aged care but the general community get a chance to see and hear about the benefits of their research—which is terrific.

Senator MOORE: So there are levels of research as well.

Mr Hunt : Yes.

Senator MOORE: It is research in care models as much as it is in some kind of scientific breakthrough.

Mr Hunt : Yes. The Menzies Research Institute is more about the scientific stuff, though.

Senator THORP: Do the comments that you have made about care for people in aged-care facilities, more specifically in dementia facilities, also apply to people who are living with BPSD—that is, standout behaviour and psychiatric symptoms of dementia, because that is the specific area of our inquiry?

Mr Hunt : Yes, they do.

Senator THORP: Could you elaborate?

Mr Hunt : One of the previous witnesses made comments in relation to people who had symptoms to such an extent that they could not be cared for within our facility. I was certainly in charge while a number of those people were transferred to Roy Fagan. In the early days, a couple of them went to ADARDS as well. There was difficulty in coping with people with severe aggression. I spent one Friday night guarding an area of the facility to make sure that other residents did not come to harm while we waited for people who could come to assist by helping to calm one of the residents. Certainly, I saw a lot of incident report forms from people who had come off second-best from providing care to residents, which is unfortunate and may reflect a lack of training, a lack of experience or even a lack of numbers in the facilities. But aged care is a consistently challenging area.

You never know which challenge you are going to face the next day but you will face some. It could be with relatives with expectations that have not been well managed. Sometimes we were involved in intrafamily disputes and in the courts dealing with St Ann's legal position, trying to preserve St Ann's rights and entitlements within the courts in relation to family disputes with people who had come on the scene recently or with family members who had not been seen for quite some time but who had turned up later on. It is an extremely challenging area to be involved in, but it obviously has its benefits.

CHAIR: Thank you very much for your evidence today. It is really appreciated. I would like to thank all our witnesses, also Hansard and our secretariat.

Committee adjourned at 15:28