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

CIDONI, Mr Joseph, Registered Nurse, private citizen

DOBROHOTOFF, Dr John Thomas, Clinical Director, Specialist Mental Health Services for Older People, Central Coast Local Health District

Committee met at 08:30.

CHAIR ( Mr S Georganas ): I now declare open this public hearing for the inquiry into dementia, early diagnosis and intervention. Australia's population is ageing and with it has come increased rates of dementia in the community. Nationally, it has been predicted that the prevalence of dementia will triple by 2050, and that will make it a significant public health issue. The committee's inquiry intends to focus on how early diagnosis and intervention can play a role in improving quality of life, social and community engagement and future planning for people with dementia and their families.

I take this opportunity to thank everyone for making time to speak with the committee today. I now call on representatives of the Specialist Mental Health Services for Older People to give evidence. Although the committee does not require you to speak under oath you should understand that these hearings are full proceedings of the Commonwealth parliament. Giving false or misleading evidence is a serious matter and may be regarded as a contempt of parliament. I hand over to you to make a brief introductory statement, and then we will open up to some questions with my colleague.

Mr Cidoni : I am a registered nurse. I work on the team that Dr Dobrohotoff leads within the Specialist Mental Health Services for Older People. Thanks very much for inviting us here today. I think we are in very good company; I saw your guest list, and some of the folks you invited are probably amongst some of the best medical people here on the coast. I saw Professor Whyte's and Doc Beckwith's names on the list, with Kathy Murphy, who is one of our better nurses in the community, and, of course, our Clinical Director, Dr Dobrohotoff is amongst the other guests.

The reason I am appearing here today is not only to support Dr Dobrohotoff but also to make sure that nursing was well represented at this committee hearing. The reason for that is wherever you go around the dementia community you will find nurses who are dedicated to working hard to assist these clients in some of their darkest moments. We have a very committed and, hopefully, soon to be well resourced nursing workforce that is very involved in the delivery of care to these folks.

I see a lot of people day to day whose names do not appear on this list, and they are folks we are never going to know. I know them because I see them. People like our CNC Cheryl Jones and another of our CNCs Michelle Kemp, as well as folks on the ground like nurses Alison Lyons and Anne Brownrigg, are not going to be appearing here today—they are going to be working.

Nurses wear different hats.

This committee is about prevention and intervention and, no matter what you folks come up with, there will always be a nurse there in that equation and in that formula.

I also want to commend the current government. The reason I do is that I think there has been some visionary action on the part of government that has been involved in the prevention of certainly vascular dementia. The recent introduction of plain-packaging tobacco, in my opinion, will go a long way to what the numbers look like in the future. There is no doubt that smoking has to be the No. 1 preventable cause of dementia out there and yet it is amongst us. I had never seen anything like that before when the government decided to start taking some of the teeth out of big tobacco, which I assume was the reason for that. I want to commend the government on that.

I also want to commend certain members of parliament who have supported our national nursing workforce. They have come out very strongly—including our local member Deb who came in early on—supporting our aged-care campaign. I am grateful for that. I work on a team of several people that includes occupational therapists and social workers. Together we do our very best to bring a little bit of light into this paradigm. It is a difficult job out there for everybody and everybody on this list. I am fortunate to work at the hospital where I have access to folks like Dr Dobrohotoff, who has been a personal mentor to me, and Professor Whyte, who sometimes answers my questions from across a parking lot or maybe on his break. We are very fortunate, but not all nurses are that fortunate. There are plenty of folks out there on a national level who do not necessarily have access to resources like I do.

We are now seeing the rise of a certain type of health worker. At some places they call them AINs; at other places they call them cert 3s or cert 4s. In some states and some facilities you do not even need to have a qualification to work with people. These health workers, whom we respect and admire, are the backbone and they will continue to be the backbone of the modern health system. But what we would like to see—and the majority of the nurses I know would agree—is for these folks to be credentialled to a certain level and that that credentialling have oversight as a profession. We would like these people to be well resourced, well educated. We want to make them accountable for their practice, just like I am. I have a licence. We believe that in doing so we will be able to maintain a certain standard of healthcare delivery. Thank you.

Dr Dobrohotoff : Firstly, I would again like to thank the committee for the opportunity to contribute to this important matter and, secondly, to have one of the hearings here on the Central Coast where we have an unusually high proportion of older people, so a corresponding high prevalence of dementia and other age-related problems. I see from the publicly available documents that you have already heard much about dementia from numerous experts. So, instead, I will provide a bit of local perspective. I think it is telling that when I inform my medical colleagues what I do—I tell them that I work with older people with mental health problems—they sometimes look askance. They do not see the value in that, yet there is much that can be done for older people with dementia and mental health problems. It does require investment and, here on the Central Coast, there has been far too little of that. I commonly see consumers who have been struggling with undiagnosed dementia and depression for months or even years. Sometimes this diagnosis has been missed, even though the person has been through hospital admission or receiving other specialist care in the community. So that is particularly disappointing.

But, of course, early diagnosis is not much use without the resources to provide necessary interventions. We have some, as Joe has mentioned, but not nearly enough. When we have introduced new services for people, we can be swamped by referrals. I am opposed to waiting lists, so our service does not have waiting lists, but it means that we cannot provide as much for patients as we would like to, and we must prioritise. Most troubling are the high rates of moderate to severe behavioural problems that our aged-care facilities really struggle to manage. There is a definite gap in services for BPSD. BPSD, as I am sure you have heard before, are the behavioural and psychological symptoms associated with dementia, and they occur in most people with dementia. We have no specialist hospital beds, for example, for this group of people. Increasingly, with so few other options, our struggling facilities rely on psychotropic medications, which are often powerful antipsychotic drugs or other sedative medications for behavioural control. This is clearly most unsatisfactory. But, again, without investment this is likely to get worse with the ageing population, which we are all very well aware of. My college, the Royal Australian and New Zealand College of Psychiatrists, has stated that Australia is unprepared to meet the needs of older Australians, so this is a good example of that.

We need not only appropriate settings for assessment and treatment but more multidisciplinary community based staff who are mobile and able to provide interventions in the community and aged-care facilities. We have too few staff who are knowledgeable and skilled in dementia care, and our current settings are not well designed to reduce behaviour problems. Lastly, partnerships between GPs, other primary care providers, aged-care services—and they will be talking a bit later today—and mental health services are important. There is much overlap between the work that we do and between the services in our area. We have recently started a process of joint planning for dementia care between aged-care services and mental health services. Very encouragingly for us, that is something that has been initiated by our colleagues in aged care, and they will be talking with you a bit further later today about that. Those partnerships need to continue. We need to be planning together for dementia care.

Finally, I would be happy to take any questions. Thank you.

CHAIR: Thank you very much for the informative talk from both of you. Some of the questions I have here have already been answered in your statements, but there are a couple of things that I have. I am very keen to hear more about the prevalence of tobacco and dementia. It was very interesting. We know that cardiovascular disease is a contributor or is one of the factors in being more likely to develop dementia if you have those problems.

Mr Cidoni : That is right.

CHAIR: Would you like to elaborate a bit more on the tobacco side of it? I think one of the things that you said—you did not use these exact words, but this is the understanding that I got—was that you have seen a lot of prevalence of tobacco with dementia.

Mr Cidoni : Thanks. When you think of cardiovascular disease, think of cardiovascular disease for the brain. Vascular dementia is a type of dementia. Dr Dobrohotoff will correct me if I make any mistakes here. Your brain is a very vascular organ. It requires a huge amount of oxygen to do all the things that it does. When you introduce anything that reduces that amount of oxygen to your brain, you are basically losing capacity of your brain. As a nurse, I know my primary mission is to promote health across the span, not just in the aged. Tobacco itself has been identified. I cannot give you the hard numbers—I am just a guy working in the community—but it is very common knowledge that smoking increases the risk of vascular dementia exponentially, really. When you reduce the amount of blood supply to your brain—just as in cardiovascular disease, when you reduce the amount of blood supply to your heart—the organ itself does not function correctly.

When this occurs you do not have full use of your faculties and things just get worse, in my experience. Tobacco has to be one of the leading most preventable causes of so many different types of health problems from respiratory problems, cardiovascular problems to the problem we are here to discuss today, which is dementia. It must be a huge drain financially and resource wise from people to money. It is a terrible thing.

Ms O'NEILL: Thank you very much for your evidence this morning, Nurse Cidoni—to give you the formal title which your role really deserves. Obviously that was a very important link to make. One of the things the committee has been finding as we have been taking evidence around the country is that there is a lot of work going on in heart health and in cancer research and this almost silos separation of prevention efforts. Perhaps this inquiry is the one in which, certainly for me, the integrated nature of these things has been brought home most clearly. To put on the record today so clearly the impact of smoking as a cause of dementia—I think this is the first time that has been done in the hearings. You never know how important your evidence is until you give it and I really thank you for making a contribution.

I was particularly interested about the way you spoke about the unit you work in and you talked about occupational health and social workers and, instead of silos, the sense of broadened connection. Dr Dobrohotoff in your evidence too you spoke about the need for partnerships. I would really like to hear from both of you about the things that have enabled you to make those partnerships and integrated care available and the barriers that are preventing you from expanding that to the service level which you probably would think would be best practice.

Dr Dobrohotoff : We have a multidisciplinary team which, in our case, is made up of doctors, nurses, occupational therapists, social workers and psychologists. They are all within our team. When I started in this position 12 years ago we did not have a team, so we have come a long way to have a multidisciplinary team. In working with people with dementia and mental health problems you might say that individual disciplines have their own expertise and would be doing different things with the patients but we find in fact that a lot of the skills are generic. So a social worker might bring their own particular perspective to that but in many ways there is a huge overlap between what the junior medical officer might do, the experienced senior nurse might do, the occupational therapist might do, but then they add value with their expertise on top of those things. That is generally how we operate; we do not operate like little silos. Then to think a little more broadly outside our team, there are other teams, which we pass in the night. We may or may not be seeing the same patients or families and traditionally are not too sure what the other teams might be doing. This is what I was referring to in some of the work we have been doing more recently and there has been a need to clearly identify what it is that the mental health services are doing, what it is in the aged care services are doing, the dementia support team who are providing education to families. We are not being inefficient by providing the same thing; we are trying to minimise the gaps which are there between our services. This coordination is going to help our efficiency a great deal.

Ms O'NEILL: How would you see those gaps being close? How much is the e-health record going to assist with that? What else would you need to have happen to create the connections?

Dr Dobrohotoff : I am glad that you have mentioned the e-health record. It was identified by my geriatrician colleagues soon after I started 10 or12 years ago that this was on the horizon.

It would help us enormously to know exactly what my geriatrician colleague has done with a patient. We even hold—I am not sure if you are aware of this—two types of files. Some of our services predominantly write their patient notes in the hospital files and there are teams, like ourselves, who work in the community who write information in the community files. Files cannot be transferred easily across an area as big as the Central Coast that has four different hospitals and people located in different sites. That transfer of information does not occur without something like an e-health system. I cannot wait till we get an e-health system up and I am sure that is going to help.

The other way of closing gaps is, for example, if a GP has someone they are worried about who might have dementia or has dementia but they want some specific intervention. In those cases it is not clear to the GP or another primary care provider who you send this patient to. Is it the mental health team for older people, aged care, geriatricians or the ACAT team? One thing we are particularly looking at is having some sort of centralised intake service, so that there is a single phone number that a referrer—whether that be a family member or a GP—can ring up and at least get some advice.

Ms O'NEILL: We have had evidence in a number of committees about a no-wrong-door policy, so that if you went to any place it would not be upon the person themselves to find a centrally located spot. That would mean you could go to any door—and we have to get somebody centralised—and any one of those doors or the person themselves could find the centrally located spot.

Dr Dobrohotoff : I think all of us on the Central Coast embrace that philosophy and that is the way that we work. You could probably find examples where it has fallen down, but generally we all take on board that philosophy. We meet regularly so that if things are falling down in that way we can identify them and do something. In the last year we have commenced a grand round—a grand round being a place where you would discuss complex or interesting patients that we could all learn from. We have set one up specifically for BPSD. I am not aware of any other area that has done that where the psychiatrists, geriatricians and other health providers bring their complex patients, specifically those with dementia, to get advice and support by liaising with other providers working in other teams.

Ms O'NEILL: Does the local Medicare Local assist you with coordination to create a bridge between allied health professionals, the community and the expertise?

Dr Dobrohotoff : It is very early days for the Medicare Locals. To date, no, in my experience. I was talking to a colleague about this earlier today and it might be worth asking that question again of colleagues. There have been some discussions, but as yet nothing firm is in place. The Medicare Locals are likely to have a very significant role in coordinating services—I hope so—but to date, no.

CHAIR: You spoke about non-diagnosis earlier. Whilst we have been conducting these inquiries it has come up in evidence that the period of developing dementia compared to when it is diagnosed is in some cases from three to five years, we hear. You mentioned depression and a range of other things that the patient may have beforehand that are signs. How do we get early intervention, which is a big part of this inquiry, through to health workers dealing with these people and who could have been dealing with them well before they are diagnosed? Is any mechanism in place to check whether a person should be diagnosed with dementia? Why are we missing those signs, to put it bluntly and simply?

Dr Dobrohotoff : I saw that that had been discussed in the committee previously, and I was very interested to see what other people had said about this. There are lots of things that you could do, and they have been discussed; it is probably worth bearing in mind that population screening may not be the answer, but screening of high-risk populations is probably going to be more significant. There are lots of barriers to those, which I am sure you have heard about before.

Here on the Central Coast, for example, there is a shortage of GPs, and so GPs tend to have fairly limited time available to do routine screening for dementia. As you know, they may only be seeing a handful of patients each year who have a new onset of dementia. So it has got to be more broad than that.

I think a lot of the answer is going to be in general health promotion in the community, so that people can see the advantages of early diagnosis. Destigmatising mental illness generally and dementia in particular I think is going to be a big part of this. But there are risks with early diagnosis of dementia as well.

CHAIR: You mentioned depression in your statement, when you were talking about non-diagnosis. Is depression one of the signs? For example, if someone comes and sees a doctor for depression and they are getting on in age—perhaps they are in their 70s—or they come to see their GP because they are finding it difficult to sleep, are they signs? What are the signs that would trigger something in a doctor to say—

Dr Dobrohotoff : That is an excellent question and thank you for picking that up. Many people with dementia will present really with a depression before they have the more cognitive signs of dementia to confirm the diagnosis. So sometimes we are seeing people with new onset of depression. They are tending to come to our service rather than an aged-care service, but not necessarily so. We will diagnose and treat depression and, even with careful assessment, we will not know necessarily whether this is the onset of dementia or not. But we will have a high index of suspicion and certainly be looking for signs and providing some follow-up as required.

Depression is incredibly common. It is more common than dementia in our older population, which is why, again, perhaps we should be thinking a little bit more broadly than purely dementia. But the brain disorders that affect older people have a very significant impact on their lives, and are treatable. We have good treatments for depression that can make a very significant impact on people's lives.

Ms O'NEILL: One of the things that has come up quite a few times is the diagnostic capacity of GPs. There has been some debate about the tools that are being used to identify, when a doctor gets a suspicion that there might be something that needs further investigation. There is uncertainty about the best path forward. Is there a best practice? That is the first part of the question.

The other thing is this. I would like to address the issue that you raised about the status of the work in the aged-care sector. I really value the work you do, and I am sure that the people who interact with you know just how valuable it is. How sad it was for me to hear you say, 'When I say I am working in this sector to my professional colleagues, they just do not value it.' How much of the problem with our failure to diagnose dementia early is actually a skill and procedure problem, and how much of it is a cultural problem: 'People are going to age and it is just a problem that we have to accept'? I suspect there is a significant interplay between those things, but if you could unpack that area I would appreciate it.

Dr Dobrohotoff : That is another great question and a great insight, really. Ageism is rife. We see this every day and perhaps we become a little immune to it until something quite dramatically reminds us that not everybody values older people in our community. I think that is very sad. When coming here today, I was thinking: why is it that I have a slightly different view? There are many of us and we tend to work in this area. I think it has a very significant impact. Part of that is knowledge and skills as well, as you say. If people do not know that there are effective things that you can do for people, if people do not know how to diagnose dementia and how to assess cognition, all of these things are getting in the way. I cannot help but wonder how much is due to the fact that people just do not think that this is that important.

Ms O'NEILL: Do you have any silver bullets? We are always looking for those!

Dr Dobrohotoff : When I come across this more dramatically—and I can only change my corner of the world, I think—I ask people what they would like for their mother or their father in this situation. Sometimes that can be effective. Also important is to remind people, I guess, of the things that this generation has done for us. It is not always effective to let them know about the sacrifices that people have made, but they are the things which first come to my mind.

Ms O'NEILL: So there is a significant cultural element to a failure to engage with early diagnosis?

Dr Dobrohotoff : Yes, I think so.

Ms O'NEILL: That is a difficult thing to address this, obviously. If we could get past that point to a level where our GPs were really good at this, how do you think we could achieve that? How are we going to engage, just on the Central Coast, our local GPs in developing the skill set that would lead to early diagnosis and all the advantages that that offers? There are two questions there—about the doctors and then about the advantages of earlier diagnosis.

Dr Dobrohotoff : Certainly our GPs will need to be upskilled and educated, and I think we are in a good position. We have a range of people who can provide that education and traditionally we have provided education to GPs, but what are the incentives for GPs to come along to the education? Once they are knowledgeable, what are the incentives for them to spend that extra time? I do not know whether some tweaks to Medicare may make this easier for GPs.

Ms O'NEILL: Are you saying it is a time investment that is required to do this and currently they are not provided with the time to undertake that kind of diagnosis?

Dr Dobrohotoff : Given that there is a shortage of GPs and they have long waiting lists, that is correct, yes. But there may actually be disincentives as well to spend that time. Making a diagnosis of dementia is not a straightforward matter. It might require getting collateral history from people who are not there at the time, with the need to chase them up with phone calls. You may need to try to find some neuropsychological assessment and neuropsychologists are in short supply everywhere, including here on the Central Coast. It is difficult. I certainly do not want to portray our GPs as not being interested, because I think it is far more complex than that.

Ms O'NEILL: We keep getting the same sort of answer everywhere we go.

Dr Dobrohotoff : But amongst our GPs there are some who are more interested than others. Perhaps we need to be targeting those who are more interested.

CHAIR: Thank you very much for giving evidence today—it is much appreciated—from the carers and nurses' perspective and the medical perspective, especially tobacco. Even though it seems very logical that there is a connection, no-one has actually mentioned it at any of our inquiries and it is good to put the two together and bring it to the fore. If there is anything else you require, we may be in touch with you, and vice versa: if there is anything that you feel should have been brought up today but was not, feel free to contact the secretariat. Thank you for your evidence, which we will take into consideration when developing our report.