CHAIRMAN —Welcome. Do you have any comments to make on the capacity in which you appear?

Mr Oakey —I am a board member of Alzheimer’s Australia ACT, but I am also a carer. My wife has Alzheimer’s.

Ms Brown —I am a research fellow at the University of South Australia.

CHAIRMAN —Although the committee does not require you to give evidence under oath, I should advise you that the hearings are legal proceedings of the parliament and warrant the same respect as proceedings of the House itself. The giving of false or misleading evidence is a serious matter and may be regarded as a contempt of parliament. We have received the submission from Alzheimer’s Australia and we have authorised it for publication. I was wondering whether one of you would be able to deliver a brief opening statement of up to, say, five minutes and then we will proceed to some questions.

Mr Rees —If it is all right with you, we will probably share it. Firstly, thank you very much for the opportunity. We strongly support the work of your committee and look forward to the outcome of it. I think the main issue in our submission can be stated fairly simply. It is about how you delegate an older person’s decision-making power to another person. That is the central issue. It is about how you invest an older person’s autonomy in somebody else. I think that is how we would put it simply. I would make the point that it has been a priority for our National Consumer Committee and our state-level consumer committees. You will see in our National Dementia Manifesto for the next election that it is a priority, therefore, for consumers in terms of action, in line with the recommendations in our submission. It also came out of the national summit that we held in Parliament House with people with dementia and with carers in October 2005.

We recognise that, if the issue can be reasonably simply stated, it is very complex legally, medically and socially. The experience we have comes out of our Living with Memory Loss programs, which are for people who have just been diagnosed with dementia and cover issues around financial planning, legal planning and care planning so that they are better able to handle the journey with dementia. I think it goes without saying that the issues in our submission are of great concern to people with dementia because they are at quite a disadvantage in the community.

We believe that our two main recommendations—that is, a referral to the Law Reform Commission and for the Standing Committee of Attorneys General to take some initiative in this area—are the way forward because the issues are complex, need a national approach and are certainly beyond the resources of our kind of organisation to influence them much further than we have tried to influence them already.

The only other thing I will mention to you is that the National Framework for Action on Dementia, which the Australian health ministers endorsed I think in May 2006, has a priority for action which reads as follows:

We have pushed quite hard in the last 18 months for health ministers to make a referral to the Standing Committee of Attorneys General, without success. Maybe they are waiting for the outcome of this committee, but it is certainly an initiative that we believe would be very positive.

Ms Brown —I do quite a lot of research in the community with people. Very specifically, I did a small study in South Australia with people with early memory loss, asking them about how they went about organising their enduring powers. It was a slightly biased and privileged group because they had attended the Living with Memory Loss support group. I found that, in each and every case, there was an issue that, one could say, could have the potential for causing problems. A couple of couples had appointed each other with enduring powers, but that was prior to the onset of dementia and now one person has lost the capacity to renew those powers. Many of the people were well educated and yet they still had difficulties. They did not know where to get the forms. Some had accessed lawyers, but not everybody wants to go to a lawyer and, in terms of making advanced health care directives, I argue that a lawyer is not necessarily the most appropriate person to go to.

Out of all the research I have done, which has been over many years, I have found that this is a complex area for people to understand so they tend not to do it. There are often mistakes in the documentation, which is a worry, and they definitely need support. At the moment in South Australia—and I have looked at the other states—it is very difficult for them to go to one central place to get this sort of information.

That sort of research has led me into looking at the national framework. I think you have already heard, and it is certainly in our submission, that there is not national consistency, national recognition or harmonisation of the laws, not just with enduring powers of attorney but very specifically with the enduring powers of guardianship and medical powers of attorney. If you trace a map around Australia you will find there are lots of inconsistencies and lots of concerns. So even when people put their documents in place in one state they are not necessarily going to be recognised in another state, so we are really urging the committee to look for some improvement in national consistency, simplification and support.

The last point I would like to make is about education, and not just of the public. When I interview doctors, particularly GPs, and lawyers, many are not well informed in this area and they can give inappropriate advice. So we need to improve the education of both those groups of professionals.

CHAIRMAN —Thank you very much. In your submission you mentioned that you have a concern in relation to an appropriate mechanism for determining capacity. As someone who used to be a lawyer, I often found it difficult to determine whether some people had capacity; they would appear to have it and yet what they wanted to do at times proved that they did not. Do you have any definitive view on what is the best way forward? At the present time, sometimes it is a GP in a short consultation who can tick and flick. Do you think that there ought to be maybe a panel of GPs? But then, you also get the problem, too, where people drift in and out of capacity.

Ms Brown —I think it is a very difficult area at the moment. I also sit on the Guardianship Board in South Australia, so we are dealing with people’s capacity and who makes the decision about whether or not they have lost capacity. First of all, I think there needs to be a much broader education and national consistency in recognition of what we mean by ‘capacity’—how we define it and who should be determining that. I mentioned to the secretary earlier that Dr Peteris Darzins has written a very helpful book called Who Can Decide? The Six Step Capacity Assessment Process, which would assist people like lawyers, doctors and social workers in actually going through a strategy of determining—

CHAIRMAN —Is that something he has published?

Ms Brown —Alzheimer’s South Australia published it about two years ago. I brought a copy but I left it in the car. We can certainly get you a copy of that.

CHAIRMAN —That would be appreciated. Obviously there is a higher incidence of Alzheimer’s in the community today. Do you think it is because people in the community tend to be living longer and therefore develop Alzheimer’s; whereas in the past there were not as many people living as long, and other things took them first?

Mr Rees —Yes. It is undoubtedly the case. We have something like 220,000 people in the community today with dementia. Based on current evidence, the best projections are that that figure will grow to 730,000 by the middle of the century. New cases each year probably total about 52,000 at the moment. You are quite right: the main driver is the ageing population. There may be elements of earlier diagnosis, but primarily it is ageing.

CHAIRMAN —But dementia and Alzheimer’s are not exactly the same thing.

Mr Rees —No. ‘Dementia’ is the generic term and Alzheimer’s accounts for, we think, 50 to 70 per cent of all cases. Vascular dementia is often mixed up with Alzheimer’s disease, and that accounts for maybe 20 per cent. The balance of 10 per cent could be caused by 70 or 80 other causes—Lewy bodies, mad cow disease, links to down syndrome—

CHAIRMAN —Aluminium cans?

Mr Rees —No, that is an enduring myth that we have not managed to dispel.

CHAIRMAN —I have avoided aluminium saucepans for years—unnecessarily, you are telling me!

Mr Oakey —Mr Chairman, my wife has early-onset dementia, and I appreciate that you are looking into the issues of older people and the law; but the fact is that a lot of the issues you will be looking at will have a crucial application to a lot of younger people. This applies also in dementia, where there is an impairment of capacity. This may vary depending on the circumstances. For example, in the case of my wife, she can be very lucid at times and she can be in and out of lucidity and confusion. This is going to be more important for younger people. A lot of the things that your committee will be looking at will have a crucial application to a larger group of younger people.

CHAIRMAN —What would be the youngest age that Alzheimer’s occurs?

Mr Rees —It is possible in the early 30s. The figures are not very good, and we are waiting on some research. There are some 10,000 people in Australia younger than 65 with some form of dementia. One per cent may genetically linked, so they are wired for dementia from the moment they are born. But keep in mind the figure of 10,000.

CHAIRMAN —Ten-thousand people under 65?

Mr Rees —Yes.

CHAIRMAN —But most people with dementia would be in their 80s?

Mr Rees —Most people with dementia would be in their 80s, and by the time you get to 85 your chance of dementia is one in four.

Mr MURPHY —I am sorry to jump in, but I am very fascinated by your statement in relation to young people. Is there evidence that more young people are getting dementia or Alzheimer’s disease, or is it just that we have more sophisticated diagnostic tools to better understand the aetiology of dementia and Alzheimer’s disease? That would disturb me. Against the background that the chairman earlier referred to, possibly all of us can expect to get it because we are going to live longer and we are not going to be taken by another event.

Mr Rees —We think it is the latter; that it is better recognition. There is also an understanding now, and I do not want to frighten you, that the pathology of dementia actually develops way back in our lives. In your 40s or 50s, the plaques and the tangles that are the signs of dementia may develop into dementia for some and others not. We are not entirely clear why some go on to develop dementia and some do not. But I think the answer to your question is certainly better recognition.

Mr MURPHY —What is the precise aetiology of dementia and Alzheimer’s? Are you more inclined to get it because there is a genetic predisposition or are there environmental and dietary factors? I am ignorant of these things. I know it is increasing and I accept the proposition that it is probably increasing because we are just living longer—that seems axiomatic. I want to better understand it.

Mr Rees —We know a lot about the pathology of dementia and not a lot about the causes. We can draw quite good pictures of plaques and tangles, and what goes wrong inside the brain, but clinicians and researchers are still very uncertain about the actual causes. In terms of the environment, we have a Mind your Mind program, which recommends that people do many of the things that are good for the heart, as well as mental exercise and all those things. There is some good evidence that they can potentially—and I underline that word ‘potentially’—reduce the risk of dementia, but there would be few, I think, who would say that environmental factors are necessarily causative.

Mr MURPHY —When you say exercise, are we talking about exercising the mind by reading, using computers or physical exercise?

Mr Rees —Mental activity, social engagement, physical activity, the right nutrition and avoiding head injury, and there are a couple of other signposts. There is good medical evidence on all those things that, if you look after those things, you can reduce your risk. But it is not a promise.

Mr MURPHY —If you are a good reader, do you think it is less likely that you would develop Alzheimer’s? One thing that worries me and worries a lot of people is the possibility of losing your mind. My mother used to say to me, ‘Johnny, if I lose my mind, knock me on the head.’ My mother was an alert old bird. She read and did cryptic crosswords and all that sort of stuff. I was impressed how she kept herself physically and mentally active. She certainly did not lose her marbles nor did my father, and I would hate to lose mine.

CHAIRMAN —I do not think you have lost them, John.

Mr MURPHY —This worries me when I hear evidence that it affects younger people.

Mr Rees —There is a wonderful study called the nun study. It was a good study. The nuns were in the same environment from the age of about 18, and their educational records and accomplishments were tracked. That research found that there was a link between lower educational attainment and dementia. The better educated you are, the more you achieve in that kind of way, again, we think your risk is reduced, but that is not a promise. If you take that cohort who had the same environment, more or less, over 40 or 50 years as nuns then that was the conclusion.

Mr Oakey —From a purely personal perspective, I would emphasise Glenn’s point: these things may lessen your risk but in some situations it will not prevent it. In our case, we can look back on my wife’s life and see that she very keen on craft, she was a big reader and she was in the public service—as indeed was the case with Christine Bryden, who was highly intelligent.

CHAIRMAN —How old was she when she was diagnosed?

Mr Oakey —She was diagnosed when she was 51 or 52. She is 54 now. We look back and think, ‘Could we have done anything different? No.’

CHAIRMAN —I hear what you say. This has been very interesting and illuminating for us, but obviously it is not helping us towards our report. I presume that there would be some people who develop Alzheimer’s/dementia whose disease progresses quickly and others whose disease is very slow. Is that a fair comment?

Mr Rees —Yes, it is true to say that younger people’s dementia progresses more quickly.

Ms Brown —Yes.

Mr Rees —In older people it is slightly slower. The average period can be anywhere between four and eight years, and it can be either side of that. But if you think of five or six years you are probably in the right ballpark.

Mr Oakey —Would it also be true to say that it may depend on the type of dementia you have; for example, temporal lobe dementia progresses much more swiftly than, say, Alzheimer’s proper?

Ms Brown —Yes, that is correct.

CHAIRMAN —Do you have a view on mandatory reporting of financial abuse?

Ms Brown —Yes. It is complex. First of all we have to define financial abuse. I have looked into it but not recently. I think there are difficulties with mandatory reporting. What exactly we mean by that needs to be teased out. I lean towards a conservative outlook.

Ms Eayrs —We could perhaps share with you a brief that was written within our organisation last year when the government was interested in broader physical and sexual abuse as well as other aspects of abuse. It was written in response to ex-Minister Santoro’s concerns in that area. There may be something in there that may help.

CHAIRMAN —If you could pass that on we would appreciate it. Also, could you direct your mind after you leave here to the question of mandatory reporting or the degree of reporting that you think is desirable and how we ought to encourage it. I do understand that there are arguments in favour and against. We have had very strong assertions in both directions, so if you could consider that it would be very good.

Mr Oakey —We talk about financial abuse but I think one thing that you and the committee would be fully aware of is that often financial abuse is a criminal offence as well—in the sense that it may result in people losing money and being defrauded of their money.

CHAIRMAN —That is exactly right and we have even noticed that some people who have been financially abused—older people—are often reluctant to report the offence, firstly out of a sense of embarrassment and secondly out of a concern that their son, daughter or relative might end up before the courts. I am personally attracted to some mechanism—which I have not quite yet finalised—of investigating financial abuse—short of criminal proceedings. I think that we would get a lot more people coming forward to have their situation rectified if they were not concerned that their children could well go to jail.

Ms Brown —Yes, I will follow that up. In South Australia we are currently doing a review of advance directives and that includes enduring powers of attorney and guardianship. I brought one of the issues papers, which I can leave for you. We have not made recommendations yet but I think one of the things we are leaning towards is that, rather than mandatory reporting, it is when enduring powers are appointed that there need to be more stringent processes and responsibility of accepting that power, because at the moment—and I am speaking about South Australia but I do not think it is very different in the other states—it is just a case of filling out a document and saying, ‘I appoint my son or daughter to be my financial power of attorney.’ There are no checkpoints and they do not actually have to declare any sort of responsibility. Whereas on the Guardianship Board, if we appoint somebody to be the administrator of that person’s affairs, they have to report to the Guardianship Board and the Public Trustee and they have to keep budget forms. I would have thought that tightening up that process a bit when appointing enduring powers might eliminate some of the potential for abuse.

CHAIRMAN —Taking it a step further, do you think that the actions of the attorney ought to be reported by the attorney or audited in some way? If that was the case, it would be horrendously expensive. Who would do it?

Ms Brown —Auditing is an issue, I agree. But there needs to be at least some sort of recognition that they are taking on a responsibility.

CHAIRMAN —It seems that there is a big push for older people to appoint an enduring power of attorney—‘appoint one’; ‘appoint one’—and yet there is not as much focus on appointing the right one.

Ms Brown —Exactly.

CHAIRMAN —Surely to appoint the wrong one or someone who subsequently develops into being the wrong one is worse than not having one at all.

Ms Brown —Exactly. I come back to my earlier point, which is in the report that we will leave with you, about putting the powers in place in South Australia. It has come out in many bits of research that I and other people have done that people actually need support when they are going through the process of appointing someone. There should be someone there saying, for example, ‘Have you really thought through that your eldest son is the most appropriate person?’—almost like a preventative strategy.

CHAIRMAN —Do you think there should maybe be an education program?

Ms Brown —Absolutely.

Mr Rees —I think we would say that there is no one solution. We have tried hard in our submission to suggest that there is a range of things that you need to do, from education through to having maybe not one-stop shops but focuses for this advice, and there is a need to think through more who needs to be present when powers of attorney are signed. So I think we would say that there is a whole range of things that need to be done.

Mr MURPHY —In relation to enduring powers of attorney, it has been submitted to us during the inquiry that the Queensland model is probably the best—and I am sure Mr Slipper agrees, coming from ‘God’s country’.

CHAIRMAN —Not necessarily; I do not believe in everything the Queensland government does.

Mr MURPHY —He comes from God’s country on the Sunshine Coast. I am starting to have a senior’s moment myself now! Do you have a view on Queensland’s model?

Ms Brown —Queensland’s model is commendable. They certainly did a lot of research and a lot of consulting before they put it in place.

CHAIRMAN —That sounds like you are damning it with faint praise, saying ‘It is commendable.’

Ms Brown —I am not sure that my South Australian advance directives review committee would totally endorse it all, and I would really like to suggest that, when we come up with our recommendations, we could forward those on to you.

CHAIRMAN —That would be good. It just seems to me that, whatever we have, we really want something that is virtually national, because people these days do cross state borders. State borders are not like the Berlin Wall.

Mr Rees —We would certainly endorse a national approach. How that would pan out in terms of principles or how far the harmonisation would go, I could not guess because I am not a lawyer. But we certainly support a national look without prejudice, necessarily, to its outcomes.

Mr MURPHY —We had a case brought to our attention in Perth of a poor lady who had been living with a loving husband whom she said had ultimately turned into a hostile resident in her house. He had no assets. She described his behaviour in relation to his financial affairs as ‘chaotic’ and said that he was incompetent in relation to managing his affairs. He went out and spent a lot of money and she inherited the bills—like buying a second-hand car which they did not need. She could not get out of that—

CHAIRMAN —Because he technically had capacity.

Mr MURPHY —Yes, because he technically had capacity. I do not know whether you have any views about that? The AMA have been supportive of advance care directives being put into place but they also indicate that they believe doctors should be able to not comply with such a plan if they feel it is inconsistent with good medical practice. In this particular case, this woman was horrified that the local doctor even allowed her husband to drive a motor vehicle in the first place! We felt very sorry for her, because she is a classic victim. She realises that her husband—who is now the hostile resident—is not responsible for what he is doing, and she poured out her heart before us. Do you have any ideas about how to deal with that?

Mr Oakey —I do not know that we can help you, apart from saying that this is very much a problem. You seem to raise a couple of issues. One is the fact that, because of the impairment, the husband was unable to make proper judgements, and doctors and other professionals seemed to be doing things that assisted that person in carrying on that way.

This is one of the problems we have noticed: that you can have all these safeguards in place, like EPAs and advance health care directives but, at the end of the day, not only do we have to have a system where they are there, but the people you deal with, like doctors, have to accept them as well, and often that does not happen. They will have other priorities—medical ethics, which might suggest to them, ‘I know this person has created this advance care directive, but really I feel I should be doing this.’ It is a problem. I am not entirely sure how we deal with that but I think education is very important to get the message through that, simply because you are a medical practitioner or whatever it happens to be—an expert—you cannot disregard an advance care directive. These people have made decisions at times when they were lucid, or they have authorised people they trust to make the decisions, and these should be accepted.

Mr MURPHY —Ms Brown, your body language when I mentioned the AMA and individual doctors led me to believe that you want to express an opinion in relation to individual doctors or the view of the AMA in relation to this.

Ms Brown —On the AMA, yes; it is a rather difficult situation.

Mr MURPHY —Unburden yourself; come on.

Ms Brown —I also sit on the Respecting Patient Choices Program; I trust you have had some presentations from that program. We encourage people to express their wishes and get all these powers in place and get everything documented, and then the doctor may say, ‘But I don’t agree with that and I can override it.’ I think that, nationally, we really do have to look at that.

I keep using my classic example from a hospital—which I heard as part of the Respecting Patient Choices Program—of a 92-year-old woman who was literally dying in hospital but was not in the hospice ward. She was very emaciated and she died and they, of course, resuscitated her, which meant breaking her ribs and really assaulting that poor, dying body—

Mr MURPHY —Breaking her—

Ms Brown —Ribs. That can happen when you are resuscitated with cardiac massage. She was then taken off to intensive care for a couple of days, at great expense, where she was allowed to die two days later. To me, that is not good medical practice.

I think we really have to have this debate between the public and the AMA. I hear these stories very often of older people with dementia who are being resuscitated or having very aggressive treatments and I say, ‘But this is not good medical practice.’

CHAIRMAN —So are these people who have left advance health directives? There are really two circumstances, aren’t there? If an advance health directive has not been written, then obviously the doctor has to use, in consultation with the family, his discretion. But were these cases where there have been advance health directives?

Ms Brown —The 92-year-old lady did not have an advance directive, so the automatic process was, ‘You get resuscitated if you do not have a declaration there that says not to.’

Mr Rees —But the answer to your question is certainly that there are numbers of cases where somebody has signed all the advance directives and done all the right things and the nurses or the doctors decide to disregard them, because they have a duty of care or because they take some other view. I think, from a consumer point of view, we need to know whether the documents are legal and enforceable or not. We have probably an equal and opposite view to the AMA: we would prefer that, except in quite extraordinary circumstances, advance directives on medical issues are properly observed by nurses and by doctors.

CHAIRMAN —It is always a problem. I do not want to defend the doctors, necessarily, but they would not know whether a particular document was legal and they would feel an overwhelming professional obligation.

Ms Brown —That is right—to save them at all possible costs.

CHAIRMAN —I can see a head shaking here and a head nodding there.

Mr Oakey —I take your point. I was going to move on to an associated point. Clearly the medical problem is a very serious one but it happens in everyday life, not just with medical things. Have you ever tried, say, going to a bank teller and saying you have an EPA—and I will just use the example of a bank, but it could be Centrelink or any other organisation—

CHAIRMAN —I hope our next witnesses are listening because the Australian Bankers Association are sitting at your back!

Mr Oakey —This is not in any way critical of them.

CHAIRMAN —I am sure your back is safe—at least, I hope so!

Mr Oakey —If you approach a teller or a Centrelink officer with an EPA, they may be a bit concerned because of their position of allowing a person, even someone producing an EPA, to sign off documents for a third party. That is perhaps human nature. If a person does have an EPA and you have got no reason to disbelieve its legality, then you should accept it.

Mr Rees —We have the same issues with Centrelink. We have been talking to Centrelink for probably 15 months about ways in which we can register the proper authority so that people can have their authority recognised on the phone or over the counter. We have not found a way around it yet.

Mr MURPHY —Do you think Centrelink could be doing a better job?

Mr Rees —I would not put it in those terms. It is a complex issue and I think Centrelink do try to respond. But we really would like the issue of the banks and Centrelink to be resolved in some way. I can understand the nervousness on the other side of the desk but, equally, I can understand the frustration of the carer or the person who has the authority but is not able to act as they should be able to.

CHAIRMAN —Thank you very much for appearing before us. Is there anything else that either of you would like to say at this stage?

Mr Oakey —From my perspective, many of the questions you raised cover the points I would have raised, so thank you very much.

Ms Eayrs —We will send you the literature with regard to dementia, younger onset dementia, causes and those things as well.

CHAIRMAN —We would appreciate that. Thank you.

[2.21 pm]