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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

Woman A, Private capacity

Woman B, Private capacity

Committee met at 09:01.

The following evidence was taken in camera but was subsequently made public at the request of the committee—

CHAIR ( Senator Siewert ): I declare open this hearing of the Community Affairs References Committee into the care and management of younger and older Australians living with dementia and behavioural and psychiatric symptoms of dementia. Before the committee starts taking evidence, I remind witnesses that in giving evidence to the committee they are protected by parliamentary privilege. However it is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to a committee and such action may be treated by the Senate as a contempt. It is also a contempt to give false or misleading evidence to a committee. If a witness objects to answering a question, the witness should state the ground on which the objection is taken and the committee will determine whether it will insist on an answer having regard to the ground claimed.

I welcome Woman A and Woman B. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided.

Woman B: Yes.

CHAIR: The other thing that I need to let you know is that we will not be publishing your evidence. However, if there is a dissenting report or additional comments, or if the committee feels that we need to use your evidence, we will come back to you to talk about which elements we would use, because sometimes it may be needed to flesh out an argument or something like that. But we would talk to you about that. As you know, we have a range of submissions. I would like to invite you to give an oral statement, if you feel like it, before we ask questions.

Woman A: Ladies and gentlemen, I would like to thank you for the opportunity to speak to you. I understand that you have copies of my submission, which is the brief synthesis of aspects of my husband’s experience of being an elderly person afflicted with dementia and living in a Hobart nursing home for 20 months. I would like to mention the following topics: firstly, the complaints process; secondly, the standard of psychosocial care; and, thirdly, the level of my own involvement on behalf of my husband.

In respect of the complaints process, since June 2012 until April this year I was engaged with the complaints process, which I found most unsatisfactory and against which I lodged a successful appeal with the Aged Care Commissioner. This process is extremely time consuming and stressful. I believe that most people who are caring for a loved one with dementia are deterred by the daunting nature of this process so that accurate representation of complaints does not in fact occur. Most of those carers are also elderly and would find it extremely difficult. If there is one thing that might change, I would suggest that the timeline of a complaint be reduced and rendered more efficient. The further empowering of investigators, giving them more teeth, would also be desirable. Additionally, I found that there was collusion between Advocacy Tasmania and the service provider so that one's confidence in a just and fair procedure was diminished. Throughout my involvement with the complaints process I also believed that strong bias prevailed between the complaints scheme and the service provider so that the considerable effort undertaken in representing one’s concerns was, from my experience in vain and, as a result, I would hesitate to repeat the process.

As to the standard of psychosocial care, aged-care facilities are also termed ‘homes’ and are in fact the last residences or homes where people such as my husband will end their days. Therefore one would hope that this final period of a person's life will be meaningful and dignified and as happy as possible, and that he or she will be comfortable, cared for with compassion, insight and imagination, and be free from pain. If staff were fully acquainted with the resident’s culture, life history, achievements and interests, preparation for enlightened and empathetic care should be possible, and without that knowledge assumptions ought not to be drawn on what is best in terms of care.

My husband is a renowned Hungarian from a culture which is vastly different from Australia's, and the staff who care for him have minimal awareness of this. He is in the last stages of dementia. He has lost speech, is confined to bed for 20 out of 24 hours a day and is totally dependent on others. Yet he is still able to express himself in particular ways. Despite such impediments, he and other people are still able to feel and to express emotions. Their spirits remain intact, as is substantiated in the work by the famous neuroscientist Dr Oliver Sacks. There are numerous valuable and pertinent resources which are available—books, the internet and various workshops—whereby knowledge and information may be gained and applied to such, in my husband's case, palliative care. In short, a higher standard of training in this area would be highly recommended. Incidentally, I have attended numerous interesting and informative workshops by world-renowned professionals in the field of dementia and care of the elderly yet not once have I seen representatives from nursing homes in attendance.

As to the level of my own involvement on behalf by husband, I am my husband's sole carer and advocate. I have visited him daily since his admission with few exceptions in order to monitor his welfare, provide stimulation and to feed him. Because of numerous previous deficiencies and concerns at the home, I felt compelled to undertake the complaints process. However, since a change of management in April this year, the situation has improved, though there are still reasons for being vigilant.

An example of this concerns a recent incident where a staff member took it upon herself to shave off my husband’s distinctive beard and moustache without my permission. Throughout my regular visits to the home, I have noticed with sadness the fact that many residents have few, if any, people to advocate for them or to visit them. They are often left to their own devices—as my husband has been and is—and they appear far from happy. This is also a situation in which improvements would and should be desirable. Thank you.

Woman B: Thank you for the opportunity to speak today. I want to focus on community care because that is my experience with caring for my mother and my husband. The main points that I want to raise today are from my submission or are connected to my submission—firstly, equitable access to support services, and support services that are tailored to the needs of people with dementia and are appropriate at all stages of the illness. The second point concerns independent leadership to educate consumers about the system, the service types, access to services and their rights. Thirdly, I wish to raise skill development, support and supervision of care workers in community settings and, finally, there is the issue of service development in psychosocial and spiritual care of people with dementia, particularly fine-tuned and intelligent approaches as the disease progresses.

In respect of the equitable access to support services that are tailored for people at various stages of the dementing illness, I think at the very least with the reforms that are now happening in aged care we would see people delaying institutional care and more people staying at home for their lifetime. That has been the case with my mother. She passed away recently but she was able to stay at home for the duration of her illness.

I have experienced a view from providers at different times that the difficult part of dementia care, the end stage, should be left to institutions. I even experienced pressure from providers to institutionalise my mother. My own view is that this disregards the wishes of many families and individuals. Some of us see the growth in packages as an opportunity to receive ongoing support in the community. Institutionalisation is not inevitable and I believe that it is incorrect to suppose that it must be the outcome in every case of dementia care. I acknowledge that there are lots of reasons why people must use residential care services and there would be circumstances, I would agree, in my own situation where I would have taken it up had I needed to. But that has not been the case so far.

There needs to be an acceptance that there is a range of symptoms associated with dementia. It is true that the psychiatric symptoms are the best known, I suppose, and the most troubling for other people, and particularly obviously for the person with the disease. But as the illness progresses symptoms such as the loss of the ability to verbally communicate, difficulty with swallowing, loss of continence and loss of the ability to walk are very significant and require just as much attention as the psychiatric symptoms.

Services that are developed as dementia specific services, I believe, need to ensure that staff have the necessary skills for that spectrum of need. They also need to manage their resources so that they can support those functional losses. My own experience has been that three day centres in particular saw themselves as not having any responsibility or role or any need to provide support to my mother as her condition progressed. Her need for psychosocial support and social interaction was detrimentally affected by that, I believe. The community can be an isolated place to live out that illness, and that is the biggest disadvantage.

My husband has dementia. It was brought on by a brain injury. He attends a disability day centre specifically for people with brain injury. The approach to supporting him and his needs is very different from the experience I have had with age-care services and I do think that there would be benefit in understanding the approaches from both environments. The other point I just wanted to make was that funding community based services such as day centres should be, or could be, better related to the needs of people who attend. For example, people with high-level needs should be funded for those higher level needs, and people with lower level needs should be accordingly provided the same level as in nursing homes. If so, I think that the cherry-picking, as it is known in the industry, would be reduced so that people who have a range of needs still have an opportunity to participate in those services.

In relation to independent leadership to educate consumers about the system, I would like to see a body assume responsibility for consumer education. My experience is that the Dementia and Alzheimer's Association does well in Hobart in providing us with guest speaker workshops, particularly to help us to understand dementia and some of the best-practice examples in providing care or keeping us informed about what is happening with clinical research. But as carers, we also need help to find our way through the system to understand our rights, to navigate the complaints scheme or advocacy, to be able to go through the process of gaining a community package or residential care or the assistance of complementary services such as day centres. I think that the Department of Health and Ageing takes a role to some extent in that. Services take a role, but I believe that sometimes it is more a marketing role than an informing role so that one is assisted to make their own choices, if you like. I think that bodies such as advocacy or carer associations could be appropriate, but at the moment they respond to you when you are in trouble rather than providing education and disseminating information widely in ways that people can access and understand. I have had experience with service providers dismissing my concerns. A common reason is that carers are seen to be too close to situations. We are not seen to be objective by providers, that we can be emotive, and we are not always taken seriously. The mechanisms for being heard as a consumer or as a representative are not good.

The complaints system is dealing with complaints, and one might use that out of desperation—as I have done. I would not recommend it. My own experience is one that I would not want to repeat. The finding of the complaints scheme in my situation was in our favour but it was given to us in such a way that the provider was able to interpret it differently. The complaint regarding my mother's exclusion from the day centre was that my mother was not ineligible, but they would not say that she was eligible either. That decision took six months, and she had died by the time it was ‘resolved’.

My third point concerns skill development, support and supervision of care workers in community settings. My mother’s needs were typical of somebody with late-stage dementia. There is a much-needed focus on psychological and psychiatric symptoms of dementia but the other symptoms cannot be ignored. My experience over those past few years was that care workers struggled with my mother's care. I have a healthcare background and I was able to support them much more than is probably usual and I found that I had to teach them all sorts of things. There were times when I found it a little bit frustrating, to be honest, because I also work and have somebody else to look after. There were things like: how to mix thickened drinks, how to feed my mother who had swallowing difficulties, and basic hygiene precautions in the home. I came across very outdated wound management practices amongst the professionals and towards the end there was a real lack of understanding about palliative care and about the relationship with Palliative Care Service between the care agency and the service itself. I found the Palliative Care Service to be excellent for me. I was able to manage the medication and everything to do with the palliative care and was simply provided with whatever I needed.

The support workers needed a great deal of support from me to deal with the emotional aspects of looking after my mother. They had been looking after her for four years with me and they were attached to her too. They did not receive support from their employer, the care agency, that simply provided us with some leaflets on who to call if they were having difficulty with palliative care or the grieving process following. The care agency itself did not have an understanding of the role of the Palliative Care Service and that could have caused some difficulties in terms of the provision of some resources and so on by Palliative Care Service, that came to the party willingly though it was not really their job to do that. So they were, and are, a range of areas I think where those workers could be much better supported. I think this is very common. I do not think it is only that care agency at all.

The last point that I want to make is in relation to the psychosocial and spiritual care. I think that it is fair to say that as dementia progresses social isolation increases exponentially. People pull back and are fearful and uncomfortable and do not know what to do or what to say or how to communicate. This is where the support services are so important—the day centres and so on. I believe very much in the value of community based care. I was lucky that I was able to care for Mum at home, but it can be, as I said earlier, an isolating environment for people to live in with an illness as stigmatised as dementia.

It was during the later stages of my mother's illness that she needed the most access to social support through something like a day centre, but this was the time when the access was prevented. I see the changes in my husband and the way people respond to those, and I saw the same thing with Mum. For my family I know that care at home is possible because of my experience, but at the same time I do not want to see them deprived of social and psychological support services outside the home environment. It would be good to see some skills and imagination applied to that support.

The opportunities for social engagement diminish as the disease progresses, but it is not right to believe that the need for social contact diminishes. The need is huge. For me it was like watching somebody with a locked-in syndrome. I knew that Mum was in there and there were ways that she could communicate with me at times, though not with speech, but nobody else would have known that. I think that the services to support people with dementia, such as day centres, care workers, complementary services such as transport, Meals on Wheels and palliative care need to be developed in ways that acknowledge and understand that social isolation is psychological isolation, and that people are not abandoned because of their illness.

Senator THORP: Obviously, with your experiences—and they are different experiences but there are some similarities—you would have an opportunity to have thought about what the best-practice model of care would be and I wondered whether from a community perspective, or a residential care perspective, you would have an opinion about what a best-practice model of care would be.

Woman A: In my case, the training of staff is acutely important. Most of the people in the home where my husband is resident are young—young enough to be his great-granddaughters almost—and their experiences of life are very limited. Some of them are only in their 20s. My husband who is 89 comes from a different culture and has had an academic life. They have a limited education; they are also paid very little, which is another very significant factor; and they are also pressured to work very hard. Therefore they have very little understanding of someone like my husband who comes from a totally different culture.

That could be to the advantage of the home if staff were trained, for example, to read a biography of the residents to find out their interests. As far as coping with entertaining, if you like, or distracting inmates, they are just dumped in front of the television and it is often commercial television which is appalling. Someone like my husband, if he is in a fallout chair for the two hours out of the 24 when he is not in bed, cannot see because he has macular degeneration, he cannot hear, he cannot comprehend, and he is just placed there because there is nowhere else or nothing else for him to do. I have asked that he be wheeled out perhaps into the sun for vitamin D, for one thing. It might happen once but it is not continued. There is so much that could be done. Otherwise he just lies in his room and it is a shocking thing—

Senator THORP: Is there any differentiation in the care regime that acknowledges the fact that your husband does have dementia? There are a lot of people in the residential care facility that your husband is in with a variety of reasons will be there. It is more about the specific treatment of someone with the needs around dementia and I wondered whether there is differentiation made.

Woman A: I think that they have a particular area for people with acute dementia but they are manly people who are still mobile. My husband cannot walk anymore so he is confined to either bed or a fallout chair, which is like a bed on wheels. There are things that can be done such as introducing tactile collections of items. There are so many different things that can be done—such as music. Music is one of Dr Sacks’s very special interests and great successes. If I did not have the radio next to my husband so that he could listen to classical music, because it was something that he loved, he would not even have that—it does not occur. And it is the same with other people in the home.

Senator THORP: What about feeding and bathing and—

Woman A: He is bathed reasonably well. He seems to be attended to quite well. I feed him one meal a day to ensure that he has at least one good meal a day. There are theories also about the protein content of food. Food for elderly people particularly with muscle wastage, as happens when they are confined to bed for long periods, should have a very high protein content, and a lot of the food that is given is synthetic food without, in my opinion, proper vitamin content. My husband also has to have food vitamised now. Generally it is not too bad but some of it is shocking stuff.

CHAIR: When you feed your husband in the middle of the day, do you bring it in?

Woman A: No, it is cooked in the kitchen. But I try to feed him the main meal. Sometimes he will eat, sometimes he will not, but the food is acceptable. It is at least a source of protein—usually vitamised meat and some vegetables—and there is a dessert. I have asked for him to at least be given yoghurt in the evening because his digestive system has slowed up and he cannot digest properly and get the very distended abdomen, which is painful. All these different things occur, which one does not realise will happen at the beginning when you place a person into care like that. There is so much that is not known by families and carers and the people who go into the homes.

Senator THORP: Who manages your husband's medication and drugs?

Woman A: That is managed by the staff. They have mostly enrolled nurses and at least one registered nurse, who oversees the enrolled nurses. I have changed his doctor because the doctor that he had had previously suggested that I withdraw food from him to hasten his death. That to me was a shock. He might as well have suggested euthanasia. His new doctor is an older doctor who supports the idea of good quality food. I think as a result of that he has endured much longer than he would normally have done so. Because of the lack of services and the irresponsibility of the home previously, he developed what is called chronic osteomyelitis, because he did not see a podiatrist. He developed an ulcer on his big toe that will never heal. As a result of that, he will be on antibiotics intermittently until he dies. That is a result of a lack of care and proper supervision in the home. There could be lots of things that happen to other people that are not dissimilar to that.

Woman B: For me, a best practice system would be one in which one could move seamlessly between all the various types of care and support that are available. For example, my mother had very bad psychosis at one stage, which is a usual part of the disorder.

Senator THORP: That was in your evidence.

Woman B: Yes. To be able to have expert residential support for that period of time would be good. But the only thing that was available was a psychiatric unit that I found not to be suitable after going to visit it, and so I kept her at home.

Senator THORP: Why wasn’t it suitable, if you do not mind me asking?

Woman B: When I went there, the clients were all ambulant. I went late in the day—about one or two o’clock in the afternoon; around about lunchtime, I suppose. They were still in their nightwear and walking around unattended. They were clearly experiencing psychoses and other symptoms. But because they were unattended I felt that my mother was not going to gain anything from being in that environment.

Senator THORP: Was this the Roy Fagen centre?

Woman B: Yes. The coordinator of our package came with me and she felt exactly the same. We were not going to gain from using that environment.

Senator THORP: That is the only facility currently, isn’t it?

Woman B: Yes. There used to be ADARDS. I have been there at other times; different times not to do with my mother’s care. It was excellent. But it no longer exists in that form. Also, there was always the thing that one would go in there for residential care as a permanent resident. I know that you can leave but it is not easy. I would like to see something like that that is able to provide—

Senator THORP: That was quite specialist.

Woman B: It was specialist. It responded really well. In fact, some of the skills that I had around supporting my mother in relation to her psychosis I learned from people who had worked there and from observing when I went there.

CHAIR: Why is that no longer available?

Woman B: I cannot be certain. It was funded partly by the state and partly by the Commonwealth. It was so different to all the other services that are available in the state. Somehow, it seems to me as an observer that it had to be brought into line with everywhere else rather than it being understood to be providing a service that was different and needed. And successful.

Senator THORP: For our benefit, how would you describe what they were doing at ADARDS?

Woman B: They got to understand each individual client really well so that the social program was structured around that individual’s needs. It is very similar to what my husband experiences with his day support in brain injury. I translated that for my mother. My mother had particular interests. She wrote letters every day, she wrote a diary, she drew, she painted, she listened to music and there were other things. In the earlier part of her illness, I continued to provide that kind of support. This is what would have happened in ADARDS. When her psychosis developed, we modified that. But we still used the things that she was interested in. Everything about her care was about the familiar: a familiar environment, her clothing and the way she dressed, music, food—those sorts of things—and activities that she had learned over a lifetime so that she continue to enjoy them as much as possible. That is what they did there.

Woman A: They are encouraged to assist in meal preparation, which was done in a central area. The theory was that, because everyone had been involved in their lifetimes with the smells of food—and smell is a huge psychiatric factor—that would bring pleasure. They were safe. They were never in a position of danger. The men were given an old car to potter around with. I can only speak hypothetically, because I did not have the pleasure of going there. But it sounded absolutely fantastic. The doctor who ran it spent years in the industry. It was his baby. He had carefully thought about it before it was constructed.

Woman B: It was a really humanistic approach. My mother never liked cooking very much. There were eight of us.

Senator THORP: That is probably why she did not like cooking very much!

Woman B: She tolerated it. I suppose what I am saying is that there is not a one-size-fits-all approach that works. She would not have been engaged in that activity; she would have chosen something different. But she would have been able to or been assisted to. The things that we did in the community program with mum, like physiotherapy every week up until two weeks before she died, were really important. They are often things that are pulled away. But that enabled her to be able to continue to move her limbs. She could not walk for the last few months, but that was all. And that also provided exercise and interaction. The support of the care workers is a really important part of a best practice model. That includes educational and emotional support. It is very hard on the soul and spirit to see somebody suffer in that way.

Senator SMITH: I was interested to read the difficulties that you had with your husband accessing the day centre and about this issue of not being ineligible. Is it that the day centre does not feel comfortable having in that environment people who might have higher needs? Is it about a lack of skill?

Woman B: Yes, I believe so. That was a HACC funded day centre as well, so both of them were. They are funded an amount of money full stop, regardless of what clients they take. The obvious easy way out, I suppose, is to take people who require the least amount of intervention and support. That is why I wonder about the idea of funding that is more attached to the needs of the person rather than just a flat funding model.

Senator SMITH: In your experience, is there much available that provides that sort of socialisation and interaction with other people for people who have higher needs?

Woman B: No. I do not think so. I could not access anything for my mother. For my husband, I use disability support services for his day care now. I gave up on aged care. He has some unique behaviours, I suppose, because of the brain injury—and that sort of injury can affect any age group. But now that the dementia behaviour is on top of that it is quite complicated. In my experience, aged care community support is not as attuned to complexity as disability support.

Senator SMITH: That is a powerful point.

Woman B: He attends a day centre where probably 70 per cent of the people are in tilt in space wheelchairs. They have very great difficulty with swallowing and often have a lot of chest congestion and continence issues—the works. The workers who work in that environment are used to dealing with the most difficult end of the scale, so Peter is a pushover for them, to be honest. In aged care, on the other hand, they find him difficult. This is a big problem.

Senator SMITH: It is a big problem if the demarcation line is going to be 65 and people are finding themselves in the aged care system when the aged care system—as you suggest—is not able to deal with the complexity or the compounding nature of some of these illnesses.

Senator THORP: That is right. They just want people to be passive and immobile and well behaved and neat and not to cause any fuss.

Woman A: Yes.

Woman B: Yes. And they construct all of the services around that, too. I agree.

Senator SMITH: Having read your submission, the points around the psychosocial elements of care and how critical they are and how not just providing the physical features for someone’s care but providing those psychosocial features—occupational therapy and music for example—are important ones. Not being sure how someone might get pleasure while suffering these illnesses but being open enough to explore the fact that someone might find pleasure in music is important. Even their carers might not find that being put in front of a television, whether it is a commercial station or a state broadcaster, is a suitable way of providing that psychosocial care.

Woman B: I agree. Absolutely.

Senator MOORE: You both talked about your experiences with the complaints system. That is something that the system tells us is there to support people and provide the kinds of interactions that you need when you are genuinely concerned. I would like to hear a little bit more about your concerns about the complaints system. How Senator Thorp asked, how do you think that it should work? There needs to be a complaints system for consumers. In both your cases, the person who was having the treatment could not complain. That means that the need to ensure this system works is greater. You obviously know each other and share things, and that sharing of personal stuff between people who truly understand is important. That is the first thing: finding someone who understands. If we could find out a little bit more about the complaints system, that would be good. You spoke specifically about your feeling that there was collusion. That is a really important thing to follow up on, particularly when there is a community as small as this one. That is the lens that you use when you are talking about this region. Everybody seems to know everybody else. That makes it even more difficult. That happens in my part of the world as well, but at least you can move away. There does not seem to be that option down here. That is the general atmosphere of my questions. You can handle that how you like.

Woman A: When I first felt sufficiently concerned to have to go somewhere, I at first went to a lady in advocacy. That was okay. But gradually I came to have reason to be more and more concerned about my husband. For example, he had 16 falls, some of which were not supervised. He damaged himself. It was not even assessed as to whether the medications that he was taking at the time could have contributed to the falls. And so on. There were lots and lots of things. I had contact with the complaints people. I spoke to two representatives, one of whom was quite inexperienced and one of whom was not. The one who was not felt that my complaint was not within their scope, so I was virtually dismissed and pushed off to the advocacy people again, which was completely ridiculous. It was a serious complaint and I was not taken seriously. I finished up returning to them, because I would not go advocacy again. The lass who I spoke to was not very helpful. She could not give me adequate assistance.

I finished up attending meetings, writing submissions, writing all sorts of statements and so on. It was very time consuming. I attended a meeting at the home that was very, very unpleasant at which the advocacy person supposedly representing me had obviously colluded with the director of the home and literally dumped me in it in front of a number of strangers. I felt that it was appalling. The director spoke to me in a very authoritarian manner, which was demeaning and most inappropriate. As time went on, supposedly there were recommendations made and interventions at the home because of the complaints and there were further meetings. But essentially I felt that there was no real understanding or empathy. Nothing effective occurred in respect of my husband. He was hardly ever mentioned. It was as though it was more a political situation rather than someone coming to them with a desperate need for understanding and genuine help. That was not provided. It became an almost adversarial situation in which this particular person felt that she had to win her case. In the end—

Senator MOORE: This was your case.

Woman A: Exactly. She had to win her defence of the complaints system and the home. I felt that she colluded with, supported and was biased towards the home rather than me. I felt that I was essentially isolated.

Senator MOORE: Once again, in this area, there were not many people working in this field, so you did not have the ability to go to an alternate provider.

Woman A: No.

Senator MOORE: You had to keep dealing with someone in whom you had no confidence.

Woman A: That is right. In the end, I appealed and my appeal was successful.

Senator MOORE: What was the wording of the appeal result? Obviously, you had gone through the process and had felt strongly enough to appeal. What was the result of the appeal? What did the appeal judgment say?

Woman A: Essentially that my complaints were reasonable and serious. They were accepted by the aged care commissioner as being correct. The home and the complaints people were found to be at fault.

Senator MOORE: That gives you some support, but it does not take away what you went through.

Woman A: No.

Senator MOORE: Was the appeal handled locally or did that come in from the mainland?

Woman A: It came from the mainland.

Senator MOORE: They were completely independent.

Woman A: Yes.

Senator MOORE: And that is the standard operation here?

Woman A: Yes.

Senator MOORE: Okay. It would be interesting to get some stats later about how that operates. We will follow up on that. Have you survived it?

Woman A: I certainly would not want to repeat it. Someone in their 80s could not possibly sustain anything like that; they could not. They do not have the stamina. They simply would not know where to go. Just the business of writing letters and attending meetings at which they are not treated with any kind of sympathy or genuine concern would be very difficult. It is not a nice business.

Senator MOORE: Woman B, you also talked about this in your evidence. You also felt dismissed and that it was emotional and not professional.

Woman B: Yes. It was not objective. I never received any documentation whatsoever. My complaint was handled by the Department of Health and Ageing complaints scheme—the same scheme Woman A used—but it was done in New South Wales because of my employment situation. It was about HACC services. It involved a HACC funded day centre.

Senator MOORE: And eligibility.

Woman B: HACC does not come under the Aged Care Act.

Senator MOORE: No. Your submission indicated your displeasure with that.

Woman B: The only way that my complaint could be dealt with was if it did come under the act. That is unfair. It is not right. This is about a complaint.

CHAIR: We heard this during the aged care inquiry. We looked at how the complaints system work for HACC funded community services.

Senator MOORE: And that is when it services people who are part of the aged system as well.

Woman B: That is right.

CHAIR: We keep getting told that it has to be dealt with by the state because of the way that aged care, disability care and HACC work together.

Woman B: Except that there was no complaint system for the state for HACC. When my husband was excluded from the HACC funded day centre because of his incontinence, I had no recourse at all. That was before HACC transitioned to the Commonwealth. They had no complaints system. That was the end of the matter; he was out; finished. This time, I could use the complaints system. But they simply were not able to respond in a way that was convincing for the provider, and so the provider just ignored what they were told. And they were able to do that. It was a futile exercise.

The other thing that I would like to say about the complaints scheme is that I feel very uncomfortable as a consumer about a complaints scheme that is operated by the funder of the service. The Department of Health and Ageing funds the providers. They name and identify the providers as their key stakeholders. They do not identify consumers as stakeholders at all. We do not fit into that.

Senator MOORE: They do in theory but it does not seem from your perspective to translate to action.

Woman B: In reality, it is not so. If anybody is ever asked about it, they will say no and that their stakeholders are approved providers, because they fund them. And then they operate the complaints scheme. It is operated, I suppose, through the code of conduct and APS values and all that kind of thing. But for somebody outside it is not right. I would prefer to see the complaints system separate from the funder.

Senator MOORE: Is that the perspective of both of you—that it needs to be independent?

Woman B: Yes.

Senator MOORE: Is there anything else that you think should be part of the complaint process?

Woman A: The advocacy should also be totally independent, too.

Senator MOORE: In theory again, it is supposed to be. All the paperwork says that it is. But your experience is that—

Woman A: It is the incestuous Tasmanian environment, I think.

CHAIR: You are not the only ones.

Senator MOORE: Western Australians and Queenslanders are all—

CHAIR: You are not so special. We do that in WA, too—say that we are incestuous.

Senator MOORE: It needs to be independent. You both mentioned the work of the Alzheimer’s Australia and the Dementia National Network. You feel that their services are strong in this area. You talked about information sessions and those sorts of things. You both said that you would like some more.

Woman B: My own experience is that as service providers they have not been satisfactory. They operate one of the day centres that will not take people in wheelchairs.

Senator MOORE: That is very odd that wheelchairs would be precluded.

Woman B: It is the case. In fact, I have the minutes of the meeting that I had with the provider who told me that they do not take people in wheelchairs and will not in future. I contacted the other day centres that are dementia specific and asked them and they also said that they do not. They said that they do not have wheelchair accessible transport. But under the HACC guidelines if they have a bus with eight or more seats it is supposed to be wheelchair accessible. But it is absolutely so. If they are asked independently again they would say the same thing: they had no compunction about giving that information. For education, information and support, they are wonderful and I would love to see all those things expand.

Woman A: They are a bit inconsistent, aren’t they?

Woman B: Yes.

Woman A: But they have had some excellent speakers.

Woman B: Really good quality.

Woman A: Yes. But they do not really offer much hands on care, do they?

Woman B: No. There is their day centre, and they have an overnight respite centre, but it is upstairs so it does not suit people with mobility issues.

Senator MOORE: Not real good on wheelchairs either.

Woman B: You would not be able to get the wheelchairs up the stairs.

Senator MOORE: What about your peer support? Each of you was going through extraordinarily difficult situations but not uncommon ones.

Woman B: No.

Woman A: That is right.

Senator MOORE: What is there to link you up so that you can give each other that kind of support?

Woman A: There is not anything, really. Through Alzheimer’s Australia I have met a few people. But you do not always have a great deal in common. Sometimes you do. For example, I was going to mention one thing. There are escalating numbers of people with dementia, including many more younger people now. One of the women whom I met was a doctor. Her husband died of frontotemporal dementia, which is a genetic disease. She alerted me to the Brain Bank Network in Victoria. I have organised for my husband’s brain to be sent there. Not enough people know about this, I believe. They need brains for research into why people are dying of this disease and what kind of dementia they had. The doctor did not know about it. The home where my husband is did not know. I think that it is very important. They serve a very useful purpose.

Woman B: There is Carers Tasmania. I have belonged to that for 10 years, but I did not realise for six years. When I started caring for my mother, I made contact with them to get some assistance with an issue. They were unable to assist me. It turned out that I had been registered with them all that time and had no—

Senator MOORE: You did not know.

Woman B: No. There was no communication whatsoever.

Senator MOORE: So they were not very proactive.

Woman B: Not at all. They are not really connected with their membership. In fact, I wonder if there are members who are no longer carers. They now send out a newsletter twice a year. It is a communication. The service that they offer is mindfulness training, which is probably helpful for some people but I did not have time to do it and therefore there was not anything there for me.

Senator MOORE: Thank you very much.

CHAIR: We could talk to you all day, I suspect. Thank you for your time and for sharing your accounts—that is the word that we have been taught to use rather than ‘stories’, because accounts are what really happens and people interpret stories as not necessarily being real. Thank you very much for sharing. It is only when people tell us what actually happens that we learn what is going on.

Proceedings suspended from 10:09 to 10:57