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

ARMOUR, Ms Pauline, Community Care Development Manager, UnitingCare Ageing, New South Wales and ACT

DALLOW, Ms Simone, HACC Development Officer, Illawarra Forum Inc.

KUMAR, Ms Rashmi, Senior Policy Officer, Council of Social Service of New South Wales

MOORE, Mr Brendan, General Manager, Policy, Research and Information, Alzheimer's Australia, New South Wales

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 a contempt of parliament. I invite you to make a brief introductory statement and then we will open up for an informal question-and-answer discussion.

Ms Armour : Thank you for giving us the opportunity to present on this important issue today. Before I make my opening remarks I would like to acknowledge the land that we are meeting on today, the land of the Gadigal people of the Eora nation, and pay my respects to their elders past and present.

The HACC Issues Forum provides a different perspective from many of the perspectives that you may have heard. The perspective that we bring is community based and has a social focus rather than a clinical, legal or another perspective and we work from a person-centred approach here in New South Wales.

The Home and Community Care, HACC, Program offers basic in-home and community based support for frail older people and people with disability. In New South Wales, HACC services provided support to around 200,000 people overall in the last financial year. People with dementia are a priority special needs group under the HACC guidelines. A large proportion of HACC services in New South Wales are delivered by non-government organisations, and this is quite different between different states and territories. New South Wales has more non-government HACC providers than many other states and territories—upward of 600—and a considerable proportion of the HACC workforce is also voluntary.

From 1 July, the Commonwealth government will have full funding and operational responsibility for HACC services for non-Aboriginal people over 65 and Aboriginal and Torres Strait Islander people over 50. This split in responsibilities based on age should not result in any discontinuity of services for people with dementia, especially people with younger onset dementia. This is very important as the aged-care reform process goes forward.

Eligibility for HACC services is based on functional capacity of the person, which means that HACC services can support people before they are able to access a formal diagnosis. This must remain the case for HACC services and other community care services. For better early intervention support, formal diagnosis should not be used as a barrier to accessing community care services. Accessing the dementia supplement for home care packages which were announced with the government's Living Longer, Living Better aged-care reforms should not be based on having a formal diagnosis. This is our position.

HACC services, as I have mentioned, operate from a social rather than a clinical model. That is, they focus on functioning and providing social support and capacity to participate in the community. HACC services often provide early intervention support into the lives of people with dementia to allow them to remain socially active and to re-establish social connections if they have become isolated. We are advocating for more basic community care services for people with dementia. While the aged-care reform package does not specifically focus on dementia support in HACC services, which will become the home support program, we want to emphasise the need for extra support at this level in addition to packaged community care and residential care. I invite you to ask any questions that you might have in respect of our submission and I will defer to my colleagues who are with me to answer specific questions you might have.

CHAIR: I heard you advocating for extra packages et cetera. You would be aware of the announcement that was made recently by the government about the extra EACHD packages in the area of dementia. How do you think they will help?

Ms Kumar : We are speaking specifically about the HACC program, and the HACC program is not getting specific funding or support through the aged-care reform package for support for people with dementia.

CHAIR: The EACHD packages that have been announced have more than doubled. Will that assist dementia patients in any way?

Ms Armour : From a service provider perspective, certainly that is good at the high end of support but not at the earlier intervention. In terms of the focus that we are looking at for early intervention, with the HACC service or the home support program, as it will become, it is at that point that we need to be looking at it. At the EACHD package level, you are talking about people at the very high end of the support stream.

Mr Moore : And it certainly would help people to remain living in their own home. It is not the desired state to move into residential aged care; the overwhelming evidence from the community is that people want to remain living in their own homes. So that will help the community to do that.

CHAIR: One of the things we have been looking at is ways to have access to that early diagnosis. We have heard that early diagnosis is one of the most important things in dementia and the early intervention to have an improved quality. You spoke about that in you submission. But can you also comment on how it might delay a person's entry into residential aged care if they do not get that early diagnosis and intervention?

Mr Moore : It might actually be the opposite situation: it will not delay; it will hasten. Getting an early diagnosis enables you to access a range of support and therapies and intervention that might otherwise be denied to you or that you might not be aware of because you have not been given that diagnosis. So it might bring it forward—your needs from support services might accelerate it.

Ms Armour : In terms of the support we find for people: if we can get access to an earlier diagnosis then information can be given to them and their families, and they can plan ahead. They can talk with their other extended family members and their social networks around how to support—

CHAIR: But you need that early diagnosis, yes.

Ms Armour : If you do not have that, then you can end up in a crisis situation. We have had marital breakup because we have not been sure about what the behaviour issue is or what the concern and cause is. There can be a lot of fractured relationships, and it makes it harder then for that person to turn around and be a primary carer or support person once they have had a diagnosis confirmed.

CHAIR: That brings me to my other question: we talk about early diagnosis, but what are some of the barriers that are there to that early diagnosis, and how can we overcome those barriers? I suppose that, to be able do that, you need additional training with people who are at the forefront of diagnosis et cetera by medical professionals. Do they have the skills that are required to have that early intervention et cetera?

Mr Moore : You are starting from a point where you are up against human nature. You are dealing with a population that does not want to know that they have dementia, and then there is a population that does not want to diagnose dementia because of what it means for the person under their care. So, if I can start with the broader population, there is a fear of the diagnosis. I have made a note that there are four things that the fear stems from: they do not understand the course of the disease, they do not understand the consequences of what it means for them, they have little control over the pathway that they will take and there is no cure. So if you work back from that endpoint—there is no cure—there is a great unwillingness to know that you have dementia because, 'There's no hope for me; why bother getting a diagnosis?' So our challenge is to get the message out there that things can be different if you get a diagnosis—we know that it changes things for you.

Ms Dallow : Another barrier is around access to geriatricians and to the diagnostics. For regional areas that is a really big issue. In the region I am coming from we have an issue with getting access to geriatricians to get diagnosis, let alone getting the referral from the GP in the first place. For other parts of New South Wales and Australia it would be far worse getting access to it. In fact, people are having to travel to metropolitan regions. We have done some research recently. A family ended up having to go to Melbourne to get a diagnosis.

CHAIR: Which area were they in?

Ms Dallow : They were from the Illawarra region. So the financial burden, let alone the emotional burden, is quite significant.

CHAIR: What process do you go through in a regional area with specialty services and so on? What process do you go through? You go and see the GP, and the GP will give you a referral—

Ms Dallow : Yes—if you can get a referral from your GP. The interaction is a big issue. As Brendan just said, there are barriers around GPs not really wanting to give the diagnosis.

CHAIR: And that takes us back to the issue of the GP intervening and ensuring that—

Ms Dallow : Yes.

Mr Moore : Often for the GPs it may be a case of some simple mathematics. There are around 20,000 GPs across Australia, and you have the numbers of how many people have dementia across Australia. If you divide the two, the stat is that a GP on average will have around three patients on their books at any one time with dementia. So it is not a front-of-mind thing for GPs in the totality of holistic care that they are trying to deliver for every single patient that walks through their door on any given day. That is a challenge for the GPs. To have an expectation that they understand and know what to do, there is a long road ahead to improve that for GPs. But then to get that referral out from them to a specialist is obviously important. As Simone was saying, it may be that you live somewhere in an isolated community and you need to be referred to a specialist in Melbourne—which I had not heard before, and that is a terrible situation to be in.

Ms Dallow : I was floored.

Mr Moore : We hear many stories in Alzheimer's Australia (NSW) of the cost of obtaining a diagnosis. We have people on the mid-North Coast having to travel to Newcastle—it is a 600-kilometre round trip—to see a specialist and to get a diagnosis that they do not want to hear.

Ms Armour : There has been a fair bit of research done from the University of Newcastle with Dr Dimity Pond around some of the issues around the barriers and enablers for GPs involving—

CHAIR: I think we will be seeing that doctor.

Ms Armour : Those issues are very real in terms of the work that we have got to do with GPs to support them. As Brendan says, the incidence is not high, but then there is more than one type of dementia and those presentations are varied. Sometimes the consultation times are too short for them to pick up that there is an issue. They do not have access to the family carer. At the moment there is no Medicare number or item for a GP to sit down with a family carer, who might be the first person picking up indications of behavioural change that they can take to the GP to say, 'Look, I think there are some issues here that need to be looked at.'

CHAIR: What would a doctor do in that situation, in your experience, when he has seen a patient and something has been triggered in his mind to say that something is not quite right? He won't speak to the spouse? Is that what you are saying?

Ms Armour : Not necessarily, no. There is not the access.

CHAIR: So what happens to the patient at that point?

Ms Armour : They may monitor for some time. They might look at different things and do a few tests to rule out other issues first, before they then start thinking of dementia as a cause. A lot of times there is a misdiagnosis, particularly with people with younger onset, as a depression.

CHAIR: So, from what I am hearing, doctors would misdiagnose this, and it could go on for a long time.

Ms Armour : They can miss things or it can delay diagnosis because they are looking at other causes and they are monitoring other health issues as a priority—blood pressure or what is happening for an older person.

CHAIR: Whereas, if they had access to the spouse or the carer, they would diagnose a lot quicker.

Ms Armour : They could pick up on the behavioural indicators earlier.

CHAIR: How would they know to ask to speak to the spouse if they have not diagnosed it? How would you make that judgment?

Ms Armour : In terms of checking if there is some sort of issue that they are not clear on, they can talk to the family carer, or the carer can ask to see them. Sometimes it is an issue that the carer does want to come in but they do not want to say something in front of their spouse, because they do not want to cause agitation which causes a violent reaction, perhaps, or a loss of confidence in that person, by saying things in front of them about the things they are no longer able to do. Some of the issues we are finding in the research we are currently doing with Alzheimer's Australia, UnitingCare Ageing and the Social Policy Research Centre at the University of New South Wales is that there are key indicators coming through from employment for people with younger onset dementia and that they are the first situations where causal factors are changing. The employer might talk to the spouse around the fact that this employee is no longer coping with their workload. How does that get to the GP? Those sorts of connections need to be made so that the GP is our primary healthcare focus and the gateway into the specialist services.

CHAIR: From what I understand, one of the biggest barriers would be the diagnosis from the GP—having a procedure in place and knowing what the next step is when something is not quite right. Everything we have been hearing is that early diagnosis is so important. Obviously something terribly wrong is happening at that point, at the GP, from what you are saying to us.

Ms Armour : I think there are a lot of different factors. Some of it is education; some of it is attitude; some of it is the family not presenting those issues, particularly for older people when there may be a concern in their mind that they might lose their driver's licence if they get a diagnosis. There are a lot of different issues involved. It is a complex area.

CHAIR: I am really concerned about the point you made about the doctor knowing that something is not quite right and then not taking the further steps. That is really significant.

Ms Armour : It can be that they are taking steps to investigate other issues prior to thinking of dementia as a first diagnosis. Some of the work that we have been doing with younger-onset dementia, with Alzheimer's Australia and with GP Access, which is the Medicare local in Newcastle, includes looking at a clinical pathway for younger-onset dementia and putting a very clear guideline in place in terms of the indicators and the referral arrangements that would be made to a neurologist, a geriatrician or a psychogeriatrician for someone who may be showing some cognitive decline in the under 65 group. We are putting some tools together that would be able to be put into electronic format to make it easier for the connection to be made. There is a fair bit of work to be done in that area which would help with diagnosis.

Mr Moore : It is making the job easier for GPs. There is a wonderful quote: if you hear hoof beats, think of horses, not zebras. So, if they are working through that process of diagnosing what the actual issue is, there are so many things that have to go through the funnelling process to finally arrive at that diagnosis. They need to rule things out before they can rule something in. As Pauline was saying, clinical pathways help also in distilling that information and going through the process of questioning and unearthing the information, and asking the right things.

CHAIR: It is still concerning that, from what you said, they do not have access to the carers. By speaking to the carer you would get a lot of the information that would make you trigger the next steps.

Ms Armour : And individually, without the person who is the patient with dementia, because there are concerns about the spouse saying things—

CHAIR: There is also privacy and a whole range of other things.

Ms Armour : Yes, there are.

CHAIR: How would we circumvent that? From that small discussion, I feel that would be a very important step which would alleviate things. You still have to go through the clinical processes, but having that discussion would certainly give you better direction.

Ms Armour : Talking to Dimity will be a useful connection, with her research, but the issue that I think she is looking at is a Medicare item number for a GP to be paid to provide time to sit and talk to a family carer. Because of the business model you have in GP practice, there is a disincentive, unless you have an item number for them to be able to have some time with the family carer, one to one.

Mr Moore : I think there is a role for organisations like us to play in supporting the practice, if you like, but there need to be incentives as well. It is one thing to make it easier, but you have to incentivise the use.

Ms Dallow : One of the other things—going back to where we are coming from—is that, if people have access to community services support in their home or at a community base level, the access to diagnosis can be moved forward, because you have trained staff. It is probably more likely in somebody who is older rather than younger-onset, because they are at a different life stage, but if somebody is accessing a community program, staff and volunteers are aware of dementia or changes in people's behaviours, and they can speak with carers or significant family members and make referrals on their behalf. If they are coming to a service and some cognitive decline is showing up, then referral to the Dementia Advisory Service or information from Alzheimer's Australia—all of that—can start to happen. That is one of the other ways to alleviate some of the barriers. It can happen that way.

Mr IRONS: Thank you for coming today. At the hearings in Melbourne we heard about minority groups. I would like to get your thoughts on that, and in particular on mature age people with Down syndrome. We heard that, by the time they become mature age, 50 per cent have Alzheimer's or dementia, but the process of diagnosis for them is a lot harder because of what they live with on a daily basis. There is the lack of capacity and resources to diagnose people with Down syndrome, and minority groups as well. I would like your thoughts on those issues.

Ms Armour : In New South Wales we have the Futures Alliance. That is a group of like-minded organisations—across aged care, disability, consumer groups and academics—looking at the issues for people with lifelong disability who are ageing. We have put together a blueprint around some of the policy issues that need to be looked at around the seamless delivery of service and the intersection between aged care and disability support. So, when you have someone who has a lifelong disability and they have been well supported through their life with disability service support and some changes happen, we pick that up and engage with specialist aged-care support services and refer for recognition of those issues. For example, you were talking about people with Down syndrome who are at the point where they may not be able to continue employment; they may need to transition to retirement earlier than, perhaps, a disability service may be thinking. But their supported accommodation model may not be tailored to the fact that they are losing cognitive ability rather than maintaining it at that age.

So we have been grappling with some of those issues and looking at what are the policy issues around making sure that we address their needs and that they are not forgotten in the split that we have within the HACC service system between age and disability, and being advocates for them, as Simone was saying. When you have service providers who are daily involved in the lives of people and supporting them—either in supported accommodation, in supported employment arrangements or in their personal care needs—they can pick up on minor changes and they can then support them, their advocates and their family members to seek that diagnosis and to support them through the medical maze that we currently have to get a diagnosis and have a service change that meets their continuing needs and understands the journey that they have in terms of their disease, which is a secondary disease. That is the issue that we also need to think about with other populations: that some people have dementia as a secondary diagnosis, not as their primary issue—so people with an intellectual disability, people living with HIV or people with MS or Parkinson's disease who may get dementia as a secondary issue. Some of those things are difficult in terms of what is our access to a diagnosis and what is our support response in terms of the HACC service system or integrated support arrangements.

Mr IRONS: Another area I hear about all the time is about respite for carers and emergency respite. How do you find those resources and capacities in New South Wales?

Ms Armour : In terms of service provision and respite, I think a lot of change is needed. Respite is not well provided to people generally. We have some pockets of good respite service provision. Under the National Respite for Carers program there have been some great models that have been put together, but they are not available equitably across Australia. They are not accessible easily in terms of the access numbers of people wanting that service who could use it. We have a lot of investment in residential respite that does not quite meet the needs of people in the time that they need it, the amount of it they have and the location that we need to redesign. So there is quite a lot of work that needs to be done to make respite fit the needs of the populations that we support.

Mr IRONS: Is that by making it a bit more flexible?

Ms Armour : Much more flexible, but also different funding arrangements and location and service models. So there is a huge amount of work to do in respite to meet the needs of people who are older with dementia, people who are younger with dementia and people who have other disease issues as their primary diagnosis.

Mr LYONS: Is that a bit to do with the silo funding—the funding comes out of this tower, so it stays there and it does not link with this other tower of service or dollars?

Ms Armour : Some of it is. Some of it is the history in terms of the different pockets of money, where it came from and what program it was. Some of it is the service models that we have currently—the traditional models of residential respite where you might have one or two beds within a 100-bed residential service. So someone who has a confusion around their dementia may turn up for a respite placement and feel very confused around the big dining room and the numbers of people and the movement in the place. Then the placement fails, and the service then asks the family member to take them home, which is still a common occurrence, unfortunately, in a lot of situations where people have failed respite placement.

Ms Dallow : And they will never use it again if that happens. Certainly we need more innovative models of respite and all service types in order to meet the changing needs. Dementia is a bit of a journey, and during that whole process there are different needs—depending on the life stage as well. Younger onset dementia is very, very different and needs to be much more individualised. Then, for older people, they will go through stages. So we need to look at more innovative models and try out some other models of support that assist carers in maintaining that person for longer at home. Respite is a key to keeping people at home for longer. That is what ends up wearing the carer out—if they are not getting appropriate, timely respite.

CHAIR: We just heard in our inquiry in Adelaide about appropriate places for people with dementia and simple things that were working. This particular witness was telling us that they had different coloured doors for the rooms, so you identified your colour and you knew where your room was—little simple things that we perhaps sometimes do not think about. There were some really innovative things that we heard in Adelaide.

Ms Armour : I think some of the models need to be more innovative in terms of community-based supported accommodation type models rather than—

CHAIR: Yes, and this was what this was: community-based accommodation.

Ms Armour : Yes. Some of those residential models are just not going to be there for the future, meeting the needs of people. It needs to be flexible and it needs to link with day programs. Day programs are very much a key to what the HACC program does, and does very well—day programs, social support, the dementia advisory services, linking in with that advocacy support, in-home respite, day program respite and overnight respite. It is not just a two-week block here and that is it; you can have it once a year. It has to be something that fits the needs of the people.

Ms Dallow : One of the issues with, say, the residential respite or the overnight respite is an assumption that it is a sleep shift when in actual fact, during different phases of the dementia illness, people will go through these 'ratting' phases where they are up all night and are going through things. Instead of fighting against that, we need to embrace that and we need to fund staff as we do in daytime programs so that there are enough staff there, it is an awake shift and they are on a different time frame to us. So we just keep going with that and embrace it, not fight it.

CHAIR: It is interesting. There was an article in, I think, the Australian—going back a while—about a particular woman who had dementia who was still at home in her community. She would wander off in the street, but instead of fighting it the family had monitors in the street—people that knew her.

Ms Dallow : Awesome.

CHAIR: Instead of fighting it they all just went along with it. She would wander off and someone would bring her home afterwards.

Ms Dallow : It does not always last the entire time; it is a little bit of a phase, as I understand.

CHAIR: This carer was saying how important it was not to fight it and just to embrace it.

Ms Dallow : Yes, because our natural instinct is to fight the whole illness. It is to say, 'No, you've already done that; no, you've already had a drink; no, you've already had a Panadol,' or, 'Remember, Bob died; he's not alive anymore.' It is a natural instinct for us to do that, and it creates so much stress for families, carers and the person with dementia, instead of embracing it and saying, 'Right, this is the path we're on right now; let's go with it.' But that is really difficult when you do not have the support to do that or to know that you can do that and that is okay.

Mr Moore : Or you have the inflexible service models that do not allow that to occur. The examples given are the residential respite booking. That sort of behaviour happens overnight, and the carer is rung up in the middle of night and asked, 'Can you come and get your husband, please.'

Ms Dallow : Or they are medicated to make them—

Mr Moore : Yes. So the respite is more trouble than it is worth.

Mr WYATT: I want to come back to a couple of questions. One is about the doctors. One of the challenges I suspect you would find is that most people now go to a multi-practitioner practice, which means they may not have continuity of care with the same doctor. What are some of the challenges there?

Ms Armour : I think that relationship building is then not there. It can get fractured if they are not able to go to the same doctor. It is obviously preferable if they can make a time or go to see the person when they are on—when they know that their doctor of choice is on on Tuesday, they turn up on Tuesday and wait for that doctor's availability. So, if you can maintain that continuity, it obviously gives a better outcome. I think that if you have a good clinical record, you have information there that is shared in a shared care environment and that doctor is engaging with case conferencing with service network support for the person then there are ways to have a team approach. Practice nurses, I think, will take more of a lead in the future in terms of engaging with people around over-70s' health assessments and doing a lot of that work with the GP. We would hope that in the future there would be some work done to increase the number of nurse practitioners with cognition focus so that there is that availability of supports, particularly within rural areas, where you have needs-support primary health care.

Mr WYATT: The reason I asked that is that we often have a reliance on doctors for a whole range of health problems and emerging health issues. The issue of education and professional updating of doctors, depending on their age, is also a factor when their practices are extremely busy. If we were to change the model of service delivery and model of care, what would you see as the optimum model? I also want to factor in that 40 per cent of rural Australia has overseas trained doctors, so what would an optimum be or what would a model be that you would seriously suggest that we consider?

Ms Armour : I think it is a teamwork model. I think it sees the GP as part of the team working with the allied health professionals in a primary healthcare focus that we are trying to work through the Medicare Locals development with. We can make sure there are connections between that GP practice and the wider service support system in that area, which includes our HACC services and the dementia adviser, the dementia clinical nurse, through the area health services or the local health districts, if they are in that area. They need to work as a team.

In some rural areas that works very well because they have very close connections with the ambulance service and the police, so if there is a wandering person they are known to their local community and people are monitoring—as in the example you gave, in terms of people wandering the streets. In local communities where people are well known, some of those things are triggered quite well and the GP is informed by multiple sources that there is a change in behaviour for that person. So I would say that the main model would be that the GP is part of a primary healthcare network attached to an allied health and a wider community connection around how we support these people best in their own community.

Mr WYATT: Given what you have just said, if our projections based on the baby boomers move towards that million mark by 2050, how do we sustain the level of support that you are suggesting?

Ms Armour : I think we engage our service system more appropriately in terms of using people's strengths. I think we look at our electronic health records. I think we look at our clinical pathways development and have those electronic links for those. We make it easier for people, time-efficiently, to pick up things and refer through to those people within their specialist network and teams of support who can do their job and move through that quickly. So we have to get more efficient, we have to get more connected, we have to use our electronic systems and we need to engage the whole community.

Part of it that we have not discussed today, which is part of, I think, that education component for early intervention, is the wider community education—the bus drivers, the police and people who are at the chemist's front line, who are able to pick up any changes and engage and connect rather than see a problem and then not do anything about it or make an assumption that this person is losing it. They can then say: 'This person may be showing early signs of dementia. What is my responsibility as a front-line person to support and connect that person to services?'

Mr WYATT: We can do that effectively in a capital city. We can do that reasonably well in a large regional centre. How would we deal with it in, say, the river towns of New South Wales?

Ms Armour : I think the community engagement and community development and the links that we have through the Uniting Church—we work closely with our local congregations and we find that they reach out very well to their local communities. There are local leaders who set the tone. If they can be educated as dementia champions, if they can connect with the Respect for Seniors work that we have been doing around how we respect and support our seniors, understanding that there are these issues of dementia and the cohort prevalence that there will be, then we can engage those natural community leaders to support our social systems and our formal services to make those connections best.

Mr WYATT: Given that HACC is home visiting by its very nature and your—

Ms Armour : Sorry, it has congregate care environments. The day program, social support and transport services are all in the community, so it is not just home support in the home.

Mr WYATT: No, the point I want to make is that there are many other agencies that also go into homes and would see one of your clients on a regular basis. Is there a coordinated effort between the relevant agencies, because all of them at some stage would see a change in the individual?

Ms Armour : Yes, they do coordinate. There is a lot of work. In terms of the Home and Community Care service system, if day-centre program service staff are noticing some changes, they would work with the family members but they would then refer, as we referred to earlier, to the dementia advisory service to have them linked in to support the person in navigating the right service arrangements. So they would then link through to Alzheimer's with Living with Memory Loss programs. They could talk to a community options program for case management support or to Home Care New South Wales about some support in the home.

Mr WYATT: My last question is about carers. Have you ever had carers walk out on their responsibility?

Ms Armour : That is a loaded question! Carers, I think, by definition choose to care, so if someone is not choosing to care then they are not identifying as a carer. Family members—

Mr WYATT: But there are instances, though, where people who are carers have either burnt themselves out or reached a point at which they make a decision not to continue.

Ms Armour : That is a different question, I would say. If there is a family carer or someone who has been providing a lot of care who feels that they have got to the point of stress where they can no longer support that person then, yes, we have found that. There are different triggers for that. We have found that, with men caring for their elderly wives, one of the issues that they find are a trigger for where they feel that a placement for residential care needs to be made is when their wife is incontinent and needs support on a daily basis and they find that challenging. For women caring for husbands, one of the trigger points for them to decide that they can no longer provide daily care is if there is aggression and behaviour is becoming violent and they feel fearful for themselves or other family members in the household, and they have not been able to have that issue addressed with medical support adequately to manage that. So there are different triggers for a carer deciding that they can no longer provide ongoing support to the person they care for.

Mr LYONS: What is the time delay in someone being referred by a GP to HACC? How long does it take to get services to that person? What is the waiting time?

Ms Dallow : It really depends on what sort of service type we are talking about. There are some for which it would be a very short time frame—within a couple of weeks—whereas there are other service types in terms of our domestic assistance and personal care where we do not have enough coverage and we do have significant waiting times; it could be six months. But that will vary from area to area and for different service types. For community transport it might be very quick—as long as it takes to do an assessment, and perhaps there is a medical appointment that needs to be had. It depends on the capacity of the individual service. At present we do not have a single entry point for our HACC services. We talk about a 'no wrong door' approach: you come through, and if I am not the appropriate service then I will refer you across. But in fact what is happening is that we have some service types for which there is a significant waiting time.

Mr LYONS: So how you would treat a person that gets referred depends on the pot of money that that service has.

Ms Dallow : That is the way the system works.

Mr Moore : And how far down the list they are?

Mr LYONS: Not on the patient need?

Ms Dallow : No. But, if a service does have a waiting list, that waiting list is not on a 'first come, first served' basis. It is on relative need and priority, and a lot of things are considered in terms of informal supports or carers and things like that. But that is the way the system works at present.

Mr LYONS: So what is the link between those pots of money? If HACC gets a bundle of money from New South Wales and those budgets get allocated out for home and community care for—I do not know—personal care or whatever, is there a link that determines the priority of that money in terms of the patient, or does this person get a bucket and then they say, 'Sorry, our bucket's run out; we're stopping now till we get a new bucket'?

Ms Armour : It is limited by supply in terms of what funding different providers have to provide which service type. We are changing the system in terms of our community care access point that we currently have in New South Wales for the Hunter, which is moving into the Central Coast fairly soon. That central point of contact looks at the person's need, does that eligibility assessment and then, if there is no supply for that service type, looks at what can be done to support that person in the interim. All services would refer directly. The HACC service system does support the person and look at an individual person-centred approach. Our first port of call would hopefully be the dementia advisory service, which would help navigate the system for the person and assist them as an advocate in the system. They would link in, hopefully, with Alzheimer's Australia in terms of information, helpline and counselling services, education to the family carer and the support for the person themselves. So there are a number of things that can be done. It may be that a personal care service in the home may take a little longer, but they can have a meal service, they can have community transport and they can have the support connections put in place quickly. That priority obviously is done in terms of what is the individual need for that person relative to the others that have also been referred at that point in time to that service.

Mr LYONS: So they might get fed, but the person might need showering, and as a result of not having the showering they might then need more acute medical—

Ms Dallow : Precisely. So, in an individual funding model, that person would be able to pick the priority of what is most important to them and purchase that along the way. But we also have a lot of situations because of the silos and the different service types that we had, what we are locked into as providers and what we can provide. I can only do personal care if I am funded only for personal care, or I can only do domestic assistance if that is what I am funded for. But we have situations where there are people who we would not class as an unmet need but they are not getting the service that they actually need. So they really need personal care, but they are getting domestic assistance and being fed, or they are getting personal care three times a week but they need it five times or seven days a week. With the way that we are funded at present, that is just not possible in a lot of situations.

CHAIR: One last question from Mr Lyons, because I am acutely aware of the time; we have gone way over schedule, and Ms O'Neill wants to ask questions as well.

Mr LYONS: Some of this is done, obviously, through aged care. The HACC connection to the aged-care funding and making that a seamless service seems to me to be a bit of an answer to some of this stuff. If you have a respite bed that is being nursed—so you are paying for a nurse to run this respite bed—yet the rules say that after you have been in for a certain time you have to get out and go back to the bed you came from, how does that all get coordinated? I only have one question! On the time the GP takes, we have heard anecdotally that it takes some time—months—to get an assessment. With the specialist there is then another time thing, and then HACC is six months, potentially. So it is a long time for doing early diagnosis and early treatment. I just wonder. I am really pleased you mentioned the practice nurses and how potentially that could be a real circuit-breaker. Sorry—long questions!

Mr Moore : I think one of the points that should be made is that you do not need a diagnosis of dementia to be able to access a HACC service, and that is one of the strengths of the program as it stands at the moment that potentially, with reforms down the track, there is a bit of a question mark on. HACC has been around since 1986. It is a wonderful program that has supported people where the eligibility is around functional impairment. So it has been able to do a lot of things for a lot of people that might otherwise have fallen through eligibility criteria from other programs.

Ms Armour : There are links between HACC and aged care. Services like my own provide both. So we do link them and we do look at a continuum of care for support for people.

CHAIR: One very last question from Ms O'Neill.

Ms O'NEILL: In light of the comments there about being linked—you talked about the dementia advocacy groups et cetera—my question is: with Medicare Locals coming on board and a real call-out to work with allied health professionals, what is your engagement with Medicare Locals and through your local allied health professionals and your doctors? Are there any connections being made to assist with wraparound care?

Ms Kumar : I think engagement between Medicare Locals and our sector is varied. Different Medicare Locals in New South Wales are at different stages of establishment, with different tranches coming on line at different times, and some have been very proactive in working with community care services. Western Sydney Medicare Local, as an example, has been quite proactive in working with our sector. Our sector has done likewise in being at the forefront of working with them and others. Others are still establishing themselves, so there is quite a bit of difference between different Medicare locals. But I think that they are an important point of contact between the community care sector and community services generally and the health system, particularly at that primary care point in terms of working together around the needs of people with dementia and other people who might need early intervention support but might not require a diagnosis.

NCOSS is working on providing resources to Medicare locals to inform them about what types of assistance are out there which do not need a formal diagnosis to begin that intervention. There are lots of local connections that are being made, and if those could be facilitated more then that would definitely be beneficial.

Ms O'NEILL: In the light of your answer there, Ms Kumar, I wonder if we could prevail upon you to put in writing to the committee a bit of analysis of where you think one of these great communications is going on, where it is working really well. You mentioned Western Sydney. Just give us a bit of an outline of what, at this time, looks to you like best practice for a response to the issue of dementia.

Ms Kumar : All right, I will take that as a question on notice.

Ms O'NEILL: Thank you, that would be very helpful.

Ms Armour : We gave the example earlier about the work with GP Access in Newcastle and the work that we have done there with the local health district and UnitingCare Ageing and Alzheimer's, working with the clinical pathway development for younger onset dementia. So there is proactive work, but some of the Medicare locals are only just evolving.

Ms O'NEILL: It saves a lot of time if you can actually identify best practice and just put some of that together right now, mindful that it is a developing thing. But it will save a lot of time and help some people, I think.

Ms Kumar : Yes. We have identified that example of GP Access in the Hunter region in our submission as well.

Ms O'NEILL: Yes. Thank you.

CHAIR: Excellent, thank you very much. Thank you for appearing before the committee today. If there is anything further that we want to ask you and, for whatever reason, we did not ask today, we will get in touch with you, and vice versa: if you feel that there is something that we did not discuss today that we should have, feel free to contact us. Thank you very much for your very informative written submission and very informative discussion.