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Standing Committee on Health and Ageing
12/10/2012
Dementia: early diagnosis and intervention

GUPTA, Dr Sunil, Clinical Director, Rehabilitation and Aged Care, Staff Specialist Geriatrician, Central Coast Local Health District

WHYTE, Associate Professor Scott, Director of Neurosciences, Central Coast Local Health District

[9:22]

CHAIR: Welcome. Although the committee does not require you to speak under oath you should understand that these hearings are formal proceedings of the Commonwealth parliament. Giving false or misleading evidence is a serious matter and may be regarded as contempt of parliament.

Do you have any comments to make on the capacity in which you appear?

Dr Gupta : I am not really part of the neurology department, but Scott invited me to speak. I am also a staff specialist geriatrician.

Prof. Whyte : Thank you for allowing Sunil to come along as well.

CHAIR: Before I ask you to make a brief introductory statement and then proceed to questions, is it the wish of the committee that these two documents that you have given us be accepted as evidence? There being no objection, it is so ordered.

I invite you to make a brief introductory statement, then we will proceed to questions.

Prof. Whyte : Just by way of introduction, I trained as a neurologist and as a geriatrician. I have worked purely in a research capacity at universities, in specific dementia clinics in Sydney and Melbourne. I have also worked as a community-based geriatrician, doing nursing home visits. In the last seven years I have been practising predominantly as a neurologist, working specifically with neurological disorders, but that obviously means a lot of aged-care work as well.

The reason for asking Sunil to come along is that we have been trying very hard on the Central Coast to coordinate dementia services. Sunil has been doing the majority of the work, in conjunction with the other people whom you have been chatting to, including John Dobrohotoff, and I think you are talking to others later on, trying to get together a coordinated approach to this issue.

I have had the opportunity to read through about three-quarters if not more of the submissions to your committee. My submission attempted to focus on a couple of issues. I was not attempting to give a broad overview of dementia; I wanted to just focus in on a few things that I wanted to accentuate. I thought the best way to do this was to tell you a story.

This story is about a patient—a couple—I saw yesterday. They are in their 40s. He has had Parkinson's disease for about eight years. This is the second time I have seen them. They have been referred from a major Sydney centre for me to start a specific therapy. I have not done that. My last comment to him, or one of the many comments I made to him, was that the marriage must survive. The marriage is the most important thing for the quality of his health. If the marriage fails, so will his health. I am presented with a couple whose marriage is failing. He made some very bad decisions. He has cognitive impairment. It is manifest as behavioural change, including poor understanding of monetary issues, and he lost a lot of money.

He is a young man with a young family. His wife has taken over their business. Every time I see them, she is in tears—has a tissue in her hand—and he looks like a rabbit in the headlights, sitting there wondering what is going on. So I spent the last two consults trying to focus in and describe to them the reasons for the behavioural changes and the thinking changes. She describes the changes as being four years in duration—they are about to separate—so it has been missed. He has lost employment. They are barely managing. She is finding it hard to cope. He does not have dementia; he has early onset cognitive impairment heading to dementia.

CHAIR: At forty?

Prof. Whyte : Yes, he is in his forties. A month ago I sat down with the people in a local psychological group, the READ Clinic, and we tried to put together a program for people with early onset problems, particularly the Parkinson's group. What is really difficult within this is the absence of federal funding for formal neuropsychological assessment. How it should run is that the patient has a formal assessment of thinking—screening tests are inadequate. They need a formal test of cognitive function. Then, in conjunction with the neurologist or whoever is caring for the patient, a diagnosis is discussed. And then the patient and the wife sit down with a neuropsychologist, pick the various cognitive issues, discuss the ramifications, and plan and discuss how this will impact upon the person's ability to manage their finances—their own business in this particular person's case—and respond emotionally as a couple. Emotional responses are often blunted, and many couples describe it as living with a different person. That is an understandable complication of the behavioural change from cognitive impairment.

So this is all discussable. It is hard to live with, knowing this does not change, but it begins the process, and then we can management plans in to try and assist people.

So this particular person had perseverative thinking, an idea that was recurrent and he could not move it away. He was fearful. So, if you sit in his chair, he is scared. He cannot work with the problems. He is lost. His power has gone away from him. His wife is angry at him, because he keeps on asking the same question over and over again. This, for the patient, becomes a bit of a living hell—the anxiety related issues. Yesterday we sat down and I tried to work out some structured approaches: writing diaries; her being explicit in the financial management; her writing plans that he is directed to read rather than ask questions of her and annoy the hell out of her.

So we sat down and tried to generate management plans. I also, in passing, changed his medications for his Parkinson's disease and helped his movement problems. He was sitting and shaking and he gets frozen a number of times during the day. That is easy.

I have tried to focus in on this in discussion of younger people, because it is a huge problem being away from a major city centre where neuropsychology services are on tap. This couple has lost their livelihood. They have a young family—under 10, some in their teens—they cannot afford the $700 to $1,000 for the first assessment and the possibly the same for the second assessment. They just cannot afford that.

I have to work through GPs, and we have done that. The way around that, because many of the GPs do not actually do what I ask them, is I send a letter to the psychologist—this is the arrangement I have made with the clinic—they will then contact and pester the GP and arrange the referral for the patient so that we actually get the person to the psychologist's centre.

The way the government has set up the funding, is that it has to be through a GP based plan, which means that they have to go back to the GP, and that has to be arranged. For the majority of cases, that is fine. But for many situations, that is where it ends, and when the people come back and see me they have not gone to the psychologist. So to try and stop people falling through that gap, I have an arrangement with the psychologists that they will pester and contact the GP—which they normally do not do; they normally do not take the front foot like that.

So this is what we had set up about a month ago with the particular clinic. And, as I said, these are issues you can understand that I think would be very important and that you can help me with and help the patients with in particular.

So that is a large amount of focus. I know that the submission from the Australian Psychological Society also raised that as an important issue. There has been a lot of focus on screening tests. Sitting and listening to some of the submissions and thinking about general practice, I was saying to Sunil that one of the values that we have is that we see people with their families, and that is where we get the history. It is very obvious, when you have a history, that the screening tests add on to that. But it is the history where you start. Having a GP situation where you do not have the family but just the person by themselves can be very difficult.

There are a lot of other bits and pieces I was wanting to add, but that is where I focused my submission: the younger onset group; a plan of management with accurate diagnosis, psychological assessment; psychological discussions of the implications of that; how you can manage finances; employment—you do not need to stop employment—but that needs to be very early in the process.

I have asked Sunil to come along, because Sunil has done a lot of work with a broader approach to dementia.

Dr Gupta : I would like to thank the committee and the secretariat for allowing me the opportunity to present. Over the past two years, Professor Scott Whyte and I—and others from the dementia care services who will be speaking to you in the afternoon—have developed a planning group concerned with addressing the issues faced by patients and their carers who live with dementia.

Our multidisciplinary group comprises specialists in the fields of aged care, neurology, the specialist mental health services of older people, ACAT, dementia care services, community support services, palliative care, nursing representation from aged care and dementia care, together with our hospital base discharge planners and CNCs. As a group, we realised that for effective, streamlined diagnosis and management we needed a plan. So we have been sort of meeting for the last two years and we have come up with a plan.

Despite the multitude of good services available on the Central Coast, many of our patients and their families struggle to navigate the maze to see a specialist or get support. So what we came up with was this central referral system, which is mentioned in Scott Whyte's submission. We felt that this was the solution, and this is what we agreed upon at a health service level, where all the experts felt that this would be the way forward. We feel that this would improve early diagnosis and intervention.

I have brought copies of the projected proposal, which is part of the dementia plan in the Central Coast, and since we have formulated this plan, I have basically extended this idea to the management of our newly formed Medicare Local. This is very important, because we need to build partnerships to let us explore how best we can serve the Central Coast community. I feel that the future of our area relies on this partnership, so that the transition of care between health services and community services does not detract from the care that these patients receive.

On another note, another fundamental problem for patients is the development of behavioural and psychological symptoms of dementia or BPSDs.

These behaviours can precede a diagnosis of dementia or complicate it during the early stages, and there is a need for significant support for these patients and their carers, who are living in the community and in residential aged-care facilities, or when they get admitted to hospital. So there is that expertise that the dementia care services provide—services like the BASIS team, our ASSET behaviour assessment team, which actually goes into nursing homes and hostels, and helps with the management of behaviours and the DBMAS teams which basically provide advice and management plans for dealing with patients with these behaviours, these services are essential but the problem is that they are short staffed, and funding is required to enhance and strengthen these teams as part of early intervention.

In summary, for early diagnosis and intervention we need (1) a coordinated and integrated health service where all the services within the health sector talk to each other and know what they are doing; and (2) a central referral and coordinating point of access—and it should not be just a GP referral based system. A carer, a patient or a nurse who is concerned should be able to call up and say, 'Look, we're really concerned.' Whoever takes that phone call—and it has to be a trained nurse or trained professional who understands dementia—gets the history and, from there, what they do is to find out what the problems are. Are there care need problems? Are there behaviour issues? Is there a diagnosis or not? Do we need to provide services straightaway? Do we need to provide respite straightaway? Do we need a diagnosis and, therefore, do we need to follow that up with a geriatrician review, a neurologist review or a psychogeriatrician review? (3) We need good co-operation between the health service, the Medicare Locals and the community services. On the Central Coast, from the conversations I am having with the Medicare Local management, I think that is the way forward.

The problem with funding that comes either from a federal level or from a state level is that there are rules as to what the funding should be doing. Every area will say to you, 'This is good and that is good,' but you can never make it so that it is standard across all areas. The local community, health, Medicare Local and community services should say to the government who are providing the funding: 'This is what we would like to do, because this is what we need for our area. This is what we already have, so we do not need another service that does not really fill any of the gaps we have.' That is the approach we would like to take. The soouth point is that we need a significant enhancement of services dealing with the BPSDs that I mentioned and that Dr Dobrohotoff stated earlier.

CHAIR: Thank you very much for the very extensive papers that you have tabled for the inquiry—the proposal and the submission to the committee. I am very keen to hear more about the idea of central referral body that plays a coordinating role in connecting a person to other services that would be required. What plays that role now? It seems to be very wishy-washy at the moment. We heard from Professor Scott about a person presenting on his own to his GP and, therefore, perhaps being misdiagnosed or not being diagnosed, or the GP perhaps not wanting to intervene in an area that is very specialised.

Prof. Whyte : Yes, that is right. The patient example I gave you actually came from a specialist, not a GP.

CHAIR: Not to detract from the question I just asked, but the specialist who referred him—obviously this person has been seeing a GP for a long time, but for some reason—

Prof. Whyte : That has not been dealt with either.

CHAIR: Yes. Why do you think that is so? We have heard other stories similar to that one, where the GPs have not—

Prof. Whyte : There are a couple of levels of response here.

CHAIR: Sorry; we have just diverged a bit.

Prof. Whyte : No, no. That is not—

Dr Gupta : Not a problem.

CHAIR: It is very interesting—and important, I think.

Prof. Whyte : You cannot really talk unless both of us are here, basically. We do work very closely together.

Ms O'NEILL: It is an integrated presentation model!

Prof. Whyte : That is right—we finish each other's sentences; only our mothers can tell us apart! There are a couple of levels of response in there. Firstly there is a time issue, and this is a critical component—and I have mentioned this in my submission. When I was a junior registrar, I was spending an hour and a half with a patient and I felt very embarrassed. I talked to my seniors at the time at Concord. I said, 'I know I'm very slow,' and they said: 'What do you mean? That's how long I take.' When I have thought about it over the years, I have thought that it does not matter how proficient you are; if you are going to spend five minutes with a patient, you are not going to get there. There is a basic issue of time: if you cannot have the time with a patient and with their family, you are not going to get a diagnosis. One of the issues I have raised here is that, if you have a high-throughput, short-time interval assessment of a patient, you are just not going to get the information. You are going to get the information on what brought them in—a sore ear—but you are not going to be able to get a broader understanding of what is going on. We pick up a lot of information from people because we spend time with them. We hear the person describe something else and realise that their memory is not great. It is from that history or from the family that you start to pick up on things. I see people with headaches, and then I notice that their histories are poor and pick up on their cognitive impairment. Or, with their Parkinson's disease, I see their facial movement and their lack of empathy and engagement with their wife and think, 'Frontal dysfunction.'

So these are things that you pick up, but you only pick them up with time. That is one of the difficulties that GPs face, I think—they have that short time-window. As I said in my submission, I do not think that just changing around the PBS is going to give the uniformity across general practices that we need. Part of the thinking behind this concept of a centralised, intelligent phone-answering service is that it does not matter what level you get to with the patient or who you are; you can phone in and that person will then be able to assess where you are up to and what you need. We are trying to generate a service that can be used by a five-minute general practice, by a general practice that does everything, by specialist services—I get referrals from cardiologists and I get referrals from surgeons, even—or by care workers. So that is the concept.

We have variability in GPs, which I do not think we are going to get over, and we want a coordinated central axis so that when the person gets the phone call they can say, 'What's been done? What do you need? Do you have a diagnosis? Have you been linked up with dementia services? Is this urgent? Is this not urgent?' The understanding and thinking behind it is that we live with this lumpy system and we need somehow to incorporate them. Those people are not going to see another general practitioner, and we are going to miss those people unless we engage the GPs who spend five minutes with the patient and unless we engage the family members and unless we engage the local pharmacists—you will notice I have comments about pharmacy at the back of the submission—and unless we engage the lawyers who see someone for ensuring power-of-attorney and enduring guardianship issues.

We have a capacity to improve earlier access and early diagnosis, but it is not going to be through the one source, and what we are trying to do here is to give you a model were we can say, 'If anyone has an idea, you phone in, and this person knows what they are going to be doing and can help you.' I hope that has linked the questions.

Ms O'NEILL: Do you want to give a response, then, Dr Gupta?

Dr Gupta : No, because, when we came up with this idea and we were discussing it for two years, this is what both of us came up with. Then we decided to have the group come together and all the services come together and think about this. This is what we have all agreed upon.

Ms O'NEILL: Thank you very much for your evidence this morning. It has been extremely clear and very helpful. I am very pleased that the committee is able to take this hearing in our seat, not just because it is close to home for me, for a change, but also because there is a regional perspective here that really helped our last hearing when we came to Gosford. I noticed that, in your early comments, you mentioned the regional nature of this and its impact on access and diagnosis and that you also mentioned the particular nature of the problems facing regional communities in addressing this. I would really like to get on the evidence your perspectives on that. Describing the issue is really important. Are there any suggestions that you have in terms of recommendations about what needs to change to improve health outcomes for people in the regions?

Prof. Whyte : Thank you very much. I have spent most of my career in major teaching hospitals. I was an academic and then, you could say, I had a sea change. I came to the Central Coast about 10 years ago.

Ms O'NEILL: Very good choice.

Prof. Whyte : Yes—my family would say so, and I certainly do. It is quite different. To give you an idea, very early on we had some money for Parkinson's disease, and I helped to set up the multi-disciplinary Parkinson's disease clinic at Concord. I have also worked in multi-disciplinary clinics at major teaching hospitals. So that has been my focus. In Sydney, I was seeing people from North Shore, from Westmead, from Sutherland and from all over the place. It was very frustrating because I would be doing a one-off assessment and sending the person back to their local area without knowing the local services in those areas. I tried to refer back and link people up with services but it did not work.

Coming here gave me an opportunity. I thought: 'We have a region here and we can actually coordinate services for people. We have the opportunities that many people in Sydney don’t have to do something different.' So when we got this funding the Parkinson's network we set up was purely community based. It was accessed by absolutely everyone; they did not have to come through me. Later on it became very obvious that I needed a specialist multi-disciplinary clinic, which we then set up, as a secondary issue. So our focus, and this is how the services are really developed—and what we can do has also been partly due to government funding availability—was a very strong community, regional focus. We are trying to keep people on the Central Coast. I think the real issue and problem with dementia, particularly with young people, is that they get sent down to Sydney for a diagnosis and that is where it stops. We pick them up years later as everything fails. They have not been linked in with local services. One really important thing is to keep people on the coast, and not just to give them a diagnosis but to link them up with the community services.

When we set up a clinic in Wyong, quite a few years ago, with Tomiko Barrett, we brought the dementia support services into it. One really interesting thing was that the people who came to our clinic also attended the support groups. This was one of the problems that we had been having—I had been putting together packages of information pamphlets and giving it to people with their diagnoses and saying, 'Here are all the services,' and three months down the line no-one had opened the packages and very few had gone to the support and education services. When we started this clinic, there was a dementia support worker—you will be talking to Mo Kane later on—in one office, and Tamiko and I in the others. As soon as people had met everybody, personally come into—

CHAIR: They had had that personal contact.

Prof. Whyte : Yes. After that, they started attending the support groups. That was a really powerful impact.

We have recently brought down from the southern sector an in-home cognitive assessment. That was mentioned here as well. That is the same sort of concept. A multi-skilled person goes into the home and does an ACAT-like assessment of legal issues, medication issues and cognitive issues. Plus, the person comes to know the client and vice versa, and the person can tell them about the dementia support services. I think part of the advantage of being in a region is the ability to get all the services together for a person and to get it right. Often in Sydney, particularly with a clinic model, people come in from distant areas and it is much harder to link them to the local services. As I said right at the beginning, we notice that very strongly—people go to Sydney for a diagnosis and then come back, and we find them with behavioural problems and no local support.

So I think there is great opportunity in regional areas, but it does require the services, and the coordination of services, being set up. That is something we have struggled with. We have overwhelmed services. I have overwhelmed the Parkinson's service because we use it for so much else. These things can become overwhelmed so easily.

The real problem is access to specialist funding, which comes with a teaching hospital. Psychological services are a real issue for young-onset dementia patients. I think it is less of an issue with the elderly it is still important.

Ms O'NEILL: Can I just get you to flesh that out? That sounds very important, but I do not understand exactly what that means, practically.

Prof. Whyte : Yes. With psychological services we should be assisting people with a multi-disciplinary approach. With the young-onset people the focus is on the difficulty of diagnosis and the need for formal thinking tests, called neuropsychometric tests, and then the psychological component of that, discussing and working through that. That is a real problem. Many of those sorts of services are well funded in the city hospitals, but it is an issue for us in the regions. We need not only that but also an intervention with all the comorbidities that go with it, like depression and anxiety. It is commonly not just, 'Does this person have depression or dementia?' They have both. Trying to weed out what is going on is very difficult, and it often requires repetitive neuropsychological assessments and, hence, more than $2,000. This is money that people who have lost work and people with young families cannot afford, hence my focus and comments on young-onset people.

That has been my focus, but we also need educational opportunities for people in a way that they can actually understand. One of the questions I have often talked with Mo Kane about over a number of years is: how do we effectively communicate with people about their dementia? If you look at the medical literature on communication, the best literature is in the area of cancer. We know that we tell people too little but we also tell people too much. But, if you do not know what you need to know, you do not know what you need to ask for.

Some people say to me, 'I'm not a group person,' so they do not go to the groups. They might say, 'I like staying at home,' or say that their husband or wife does not want them to come to the group. For some people the dementia support groups work extremely well. When you look at education, it needs occur not only at the beginning but throughout the person's illness, particularly driven by their need. You will remember something when you need to know about it. I think about what I have said to people and think I should have said this or that. Maybe I should have, but I can say a lot of things in an hour, and you can probably understand that it is hard to shut me up.

CHAIR: Not at all.

Prof. Whyte : But it is very hard for people to understand all that in reality. So it is not about me spending more time in a consult telling people more and more information, which they will forget; it is about us generating a service which people can access when they have a question, at different levels and in a way that makes sense to them. Some people are very conceptual learners. You can say to me, 'My husband got very angry', and I might say, 'Use distraction.' That is a concept. Or I can say: 'You need to walk out for a while then come back in and turn on some music. Then, why don’t you get a photo album out and talk about the children?' It is the same thing, but only some people understand the concept and are able to adapt it to new situations. With other people, you need to talk about what to do in every situation—'In the morning, on the Tuesday the 7th, do this, or 'On Wednesday, do that,'. It is all the same, but those people need the concept to be fleshed out.

That sort of discussion and interaction with people is something that happens over a long time period, and that is a wonderful thing that the dementia support services do—they talk about concrete examples. Many people need that, and that is not something I am able to do, as I see people only once every three or four months. So I do not have a role in that; other people have a role in doing that. But some people will not come to the community meetings, and I cannot get them to go there. What we do have—but it is very hard because we do not have enough funding—is the dementia support services, Mo Kane's group, who can go to patients' homes. Geriatricians can also go to the homes, but there is the same sort of limitation. We need the ability to get to people where they are at, in a fashion and at times that make sense to them and relate to their situations.

When I talk about communication skills with the medical students, one of the fascinating questions I ask them is what they feel responsible for—telling people the right thing or having people walk out of the room understanding the right thing. They are completely different concepts. But the majority of the medical practitioners will work on the first one—telling people the right thing. But we have a responsibility for people to understand and that comes with time. It comes with being able to talk about that, work through the issues in their mind, and come to those issues on a number of different occasions. So this is really a lot of very important work that is not doctor led. It is psychologists and community nurses. It is all of that system coming together.

Ms O'NEILL: I am very mindful of how much data uploading is going on now and how people are increasingly using YouTube. My own children are teaching themselves how to play the guitar and the ukulele just through YouTube. I am very aware also with the different people I meet on the coast. Some people really are very social and enjoy that personal contact, and others want to go and have a think about this in their own time and in their own way. Are there resources currently available, like YouTube videos at a healthcare website that have easy download information about dealing with this problem of dementia? Is that sort of easy access in a visual, discursive form available and accessible currently?

Prof. Whyte : The Alzheimer's Association is a wonderful group that offers support, and I think we talked about the variability in diagnosis and we need to embrace the variability. We also need to embrace the variability of information and education. The difficulty is to understand the quality of that, and YouTube is such a variable source. I think that the Alzheimer's Association does a wonderful job. They have more pamphlets, I think, rather than that. They do generate a Living with Memory Loss course—and you will talk to MOCA later on about that—and that is a personal, discursive thing.

I have tried to use the internet on a number of occasions. For many, many years—maybe more than 15 years—I have been trying to get people to generate Advance Care Directives. I have sold books to people and I have done a whole variety of things. More recently I have been giving people web addresses and, by and large, no-one looks them up. It is not the access; it is the need.

CHAIR: It is that person to person—

Prof. Whyte : Yes. I have just run out of a hundred booklets—you get the idea that I talk about this a lot—and I have been buying more from advancecaredirectives.org.au. I hope that you have seen that. I work through that booklet with people and I sell them the booklet. We buy it out of trust funds and then I have to sell it to them. I end up giving a lot away and so we end up having to buy more. I find that if the people have met someone, if they buy the booklet and we go through it, it happens. If I give them a sheet, saying, 'Please look at this web address,' it does not happen.

Ms O'NEILL: Yes, I understand the concept of teachers and homework. It is the same sort of thing.

Prof. Whyte : Then the second time that people see me, I talk about it again. That is part of my routine. We talk about it and then I have a list of things—have you managed the Advance Care Directives? Have you done that? So I get an idea of how many people do it. When I get the book out, most do it. When I give the web address—

CHAIR: Diverting a little bit away from what we have been currently talking about and going back to something that you and others have mentioned. Depression has been coming to the fore a lot in terms of our discussions and with other witnesses. How closely is it connected to dementia and how do you deal with someone who has been a sufferer of depression all his life? When does that depression become a sign of dementia and how do you know when to intervene? They are very difficult questions—

Prof. Whyte : Yes, it is very hard and it varies among different groups as well. I have not talked about the disability group and I think that it is a really important concept so I might address that through the disability group. Let me give you another example because I think we remember examples. At Wyong, I looked after a young patient who was, I think, in his 30s. He sat in a chair and—

CHAIR: He was suffering depression in his 30s?

Prof. Whyte : He was a developmentally disabled young man who had had a fall and was in rehab. The carers from the home had to come in and feed him because he would not accept nursing staff being near him.

He had done that for the last three or four years. His function was dropping off and he was diagnosed with dementia. I was discussing it in a group, and someone said, 'Is he depressed?' I started antidepressant therapy on him. A month later, he walked into clinic. He walked into the office of Tomiko Barrett, who was the other neurologist, said hello to her, came across to me, shook my hand and said hello to me. He was the best he had been for six years. He had had unrecognised depression which had been fixed and which, in a disability group, demonstrated itself as reduced function without the comments of internal angst and mood change that you see in a non-disabled group.

It is often the same with the elderly as well: you see a drop-off in function which can be difficult to diagnose as dementia or depression. So at times it is extremely difficult. It is often comorbid: the two go together, rather than one or the other. There has been a lot of debate in the literature about the increased incidence of dementia in elderly people experiencing depression, so for many people it seems to be an early precursor. As to whether one causes the other or whether the same process that is causing dementia is also causing depression, I think that makes better sense. If you look at vascular disease, for example—dementia in the elderly is commonly mixed Alzheimer's and vascular disease—then depression is a common comorbid feature of vascular disease, as is dementia. So you often see the two together. One of the things that I think are really obvious in this group is that you cannot just use a tablet; you have to actually look at interventions with activating activities. A person has to get out. They need to get involved in things.

CHAIR: You say 'activities'. We see lots of activities; for example, you see carpet bowls. Obviously that is not for everyone.

Prof. Whyte : That is right.

CHAIR: What sorts of activities are they that really stimulate the—

Prof. Whyte : I give people three things to deal with early cognitive impairment and also with depression. They include physical activity—half an hour to 45 minutes of walking three to four times a week. That is the sort of level of physical activity that is evidentially associated with improved cognitive function and mood. You can also look at interaction in social environments; that has also been evidentially linked with improved cognitive function.

CHAIR: So the carpet bowls might not be interesting, but interacting with other people around you at all times is beneficial.

Prof. Whyte : Yes, so you have to get people out. I think it is very noticeable that, if you just give a tablet, a person sits at home saying, 'I'm bored, I'm bored, I'm bored,' and their mood never truly lifts. You may help the depression a little bit with a tablet, but that is not enough. That again is where this model comes in really well, because that care worker can link in. It is an enormously disparate group of services for aged care, and it is not just about diagnosis; it is about the support groups, the day care groups and the Men's Sheds. It is all that local area knowledge which I do not have of something that one of my patients—

CHAIR: Yes, interaction—bringing people together to interact.

Prof. Whyte : That is right—again, that concept of a coordinating group for people.

CHAIR: In years gone by—a couple of generations ago, and even in the last generation—we had bigger families, where nanna and grandpa sometimes would be at home with their children and their grandchildren, so there was this massive interaction that took place between families but now does not exist. It does in some cases, but in a lot of cases our whole lifestyles have changed, so therefore we have become more isolated. Does that have an effect? Obviously, from what I am hearing this morning, that could play a big role as well—that people are on their own.

Prof. Whyte : Yes, it does. The people who have some of the most rapid progressions in their dementia are people who are isolated and living alone, and they are a very difficult group to get to, because we rely upon the carers and the family to start taking over the functions of the person with dementing illness. I describe this as the people sometimes becoming the brain for the person, taking over the functions that the person cannot do. Activating them, getting them involved et cetera is part of that, and that is very difficult. I think many people often stay at home way too long.

We like to keep people at home, and with community services and things like that I think that is good. But at times, if they are isolated, that is not a good thing for people to do. We should be putting them into enriching environments. A lot of people improve once they get into hostels.

CHAIR: It is interesting how we constantly hear and talk about keeping people at home for as long as we can, but in some cases it is totally isolating them from the rest of the community.

Prof. Whyte : Yes, that is right.

Dr Gupta : And we see that a lot. Sometimes patients come into hospital because of medical needs and they are in a supported environment. You actually see them flourish. When they first come in they may be very low in mood but when they start interacting they actually improve.

Ms O'NEILL: Yes. Our bodies are not separate from our minds and our hearts.

Prof. Whyte : No. It was interesting when you were talking about smoking with Joseph. That is very true. There is a lot of data linking midlife vascular risk factors with chance of dementia. Smoking is one of them, as well as hypertension and high cholesterol. That all links in—physical activity, mental activity—with chance of dementia in later life.

Ms O'NEILL: I know our local Meals on Wheels, who provide such a wonderful service, have changed their processes and procedures to stop leaving meals if people do not come to the door. So they have really taken on a much more vigilant interaction role in terms of identifying people's state. I think we are growing in our wisdom about these things as a community. Before we close, I would really like to invite you to make sure that if there is something that we did not get today then you give us a set of recommendations, perhaps in addition to what you have already submitted. But I would like to get on the record before we finish a comment about the medication safety. I thought that was very interesting. I had not seen any of this in your evidence so far; I may have missed it—I have not been at every hearing. But I would love to hear about the medication safety.

Prof. Whyte : I think there are three basic issues that we have. The first—and this is unnecessary—is that we have had a proliferation of new trade names with generics. Not all companies do this. Many companies use the actual name of the drug. This is a confusing conversation, because 'generic' for us means the name of the drug, whereas 'generic' in the community means a substitute for the original. So there is this confusion about the terminology. Many companies will, for example, write 'John's Pharmacy Paracetamol'. But the government has allowed the generics to create a new name. So now in many areas we have 10 or 15 new names. You would think, 'Well, that's not too bad,' but the next bit of the puzzle is that retail pharmacists change every month. I have had a 35-year-old man come in to me not knowing the name of his drug. I looked at him aghast, and he said, 'They change it every month.' What happens is that the retail pharmacists get a new package deal, so all the generics get changed. The name gets changed, the size of the tablet gets changed, and the shape and the colour get changed.

They are the basic components of medication safety. I get a medication history on every patient I see. Even if I have prescribed a drug, I will ask, 'What are you taking?' because often what I think they are taking is not the same as what they are taking. It has been very noticeable that people really do not know what they are taking anymore.

CHAIR: Perhaps I could relate a personal story of mine, as you did earlier. A particular staffer of mine was looking after an uncle of his and his wife. They were an elderly couple, and he had to go and care for them. His uncle was diagnosed with dementia, but all he wanted to do was sleep all day, and his wife, who was also very elderly, would argue with him and say, 'No, you can't go to bed in the middle of the day and just sleep.' They realised he was taking his sleeping pills in the morning, thinking they were something else—paracetamol or whatever other drugs he had—because the names had all changed. So this man, for about three months, was taking his sleeping pill in the morning instead of taking it at night to relax him to go to sleep, because he had been wandering the corridors at night. He was now taking it in the morning when he was getting up, and by 10 o'clock he wanted to go back to sleep. This was causing enormous confusion in the family, and they discovered this after three months.

Prof. Whyte : It is logic, isn't it? It is just so obvious. And it is so frustrating that the system has generated it. We should be saying that all generics must have the name of the drug in the actual list. If it is paracetamol, it is Paracetamol-John's or Paracetamol-Apo. We can do this with cigarettes; we can say, 'You don't have trade names.'

CHAIR: It is interesting that my staffer at the time discovered it, after he sat down with both of them and asked, 'What are you taking?'

Prof. Whyte : I had a 35-year-old lady admitted, staggering. She was on an anti-epileptic. The pharmacist had dispensed double the dose, but it was a generic and a new shape and a new tablet, and they did not recognise it. She was admitted. Her admission was due to her generic substitution. I think this is a really important issue. There is also another issue, in that generic medications have to be within 20 per cent of the dose of the original drug. That is 20 per cent below or 20 per cent above. So they do not have to be an identical dose. With drugs with narrow therapeutic indices, such as anti-epileptics, cardio—Warfarin—it is generally being discussed that we should not be generically substituting. If you look at Topiramate, an anti-epileptic drug, the evidence in the States is that there is an eight times increased risk of admission to hospital and a four times increased risk of fracture if you have multiple generic substitutions. That is another safety issue. If you look at dementia, I would hope that is an easy thing to do, a sensible thing to do.

I would make a few closing comments. I notice Joseph's comment about nursing and credentialing nurses. When you look at the literature on our ability to understand our capacity, if it is something that we are not really proficient at we tend to overestimate our ability and if it is something that we are proficient at we tend to underestimate our ability. I think this really describes well aged-care nurses. The abilities of the nursing staff are unrecognised. But I know as a geriatrician that if I send a confused person to a ward with good aged-care nurses I can reduce the medication that I give that person. The skills of the aged-care nurse are generally not recognised and not necessarily, because of that, taught. So I think Joseph's comment about credentialing the skills of an aged-care nurse and a mental health nurse are really important. I think we undervalue those. We cannot look after people unless we get that basic nursing aspect right.

I would also like to make a comment about the issue of the coordinating committee. I think for a coordinating committee to work, it needs to have not only our own desired reason for being; we generated it because we want to coordinate things. But if that committee actually makes decisions and alters structures, has the capacity to change things, then I think you will see that being generated in other areas, because that is the way to effect change in dementia services. That committee is given the ability, the power, through Medicare Local or whatever, to make decisions, whether on funding or not, on dementia services around the area. So then it is not just because we are in an area where we all talk to each other and our kids go to school together or whatever; it is because there is a need. There is funding, there are things coming through, and I think that will help cement the need for people to have this coordinated approach in each area.

As a separate comment, I think we need to link the hospital delirium networks up. Delirium is an early symptom of dementia. One of the questions that we have is: who should be making the diagnosis? Obviously everyone. But it is this whole immunisation issue—we immunise the people most at risk. We like to immunise the whole population but we hit the at-risk first. The frail elderly commonly have dementia, and that dementia will more commonly impact with delirium, falls and other problems.

So, whilst a smaller percentage of the total, people presenting to hospital with delirium should be linked up with community services as a matter of course. We need that acute hospital network linking with the community dementia support. It is often the first diagnosis of a potential dementing illness, and we have been trying to do that with identification of delirium. We have a nursing delirium assessment tool; in our wards, we have a sticker 'delirium' which goes into the notes; and in the morning coordinating board meeting as part of our procedure we have a discussion of whether this person has comorbidity in delirium. We go through every patient on the ward every day and look at whether or not they have delirium. We have tried hard to incorporate delirium into recognition and diagnosis, and now we need to link that up with community follow-up. That is just a comment.

I would like to make a left-field comment: I really do not want donepezil supplied by GPs. The reason I do not want that is not because I want to do it myself but because donepezil and those drugs for dementia are sometimes the only reason that people see me. I think the most important thing about that drug is not the drug itself but the fact that it gives people hope and makes them seek assistance. If you give prescribing rights to someone who is just going to see them, give them the tablets and send them home, you have lost the value of the drug. If you are going to have donepezil prescribed, it has to be within the context of the support that is associated with it.

CHAIR: It is no good just giving the drug without the support.

Ms O'NEILL: As predicted earlier, that was an excellent finishing sentence! We have only received this submission today, but in the time that Steve has been asking questions I have had a chance to look at your dementia care referral service sheet. I want to congratulate you. I am sure you have gone through many iterations to get to the point where you have such a dense, rich source of data. As the local member I am very keen to see how that progresses locally. I am sure it would be helpful for the committee in terms of putting together on one page some of the critical factors which you have clearly identified need to be part of a more sophisticated and rich conversation as we move forward. Thank you to you and all your team who have reached this point and thank you for providing to the committee today.

CHAIR: Thank you very much for submitting to the committee. It has been a very informative session and it has been very beneficial for us to get your insights on where you would like to see this area heading. If there is anything further which for whatever reason was not raised today, feel free to send it through to us and we can still use that as evidence. If we have any further questions we will be in touch with you. Thank you very much.