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

EDDY, Mrs Jennifer Olwyn, Chief Executive Officer, Woy Woy Community Aged Care

MURPHY, Ms Kathy, Registered Nurse and Assistant Care Manager Hostel, Woy Woy Community Aged Care


CHAIR: Welcome. Although the committee does not require you to speak under oath, you should understand that these proceedings are formal proceedings of the Commonwealth Parliament and giving false or misleading evidence is a serious matter and may be regarded as a contempt of parliament. I now invite you to make a brief opening statement before we proceed to questions and a general discussion.

Mrs Eddy : I will just tell you a little bit about our organisation. Woy Woy Community Aged Care is a not for profit community organisation. We have very strong ties with the community and we look at how we can support our community. We are a 94 bed residential aged care facility. We have 54 high-care beds, 40 low-care beds, two dementia specific units, including one high-care unit and one low-care unit, and we also provide respite. We believe the quality of life for people with dementia is very strongly based on the care and the quality of services provided to them.

We wanted to speak predominantly from the admission process, because we are seeing families in crisis who quite often have reached a point where they feel they have failed because they have to admit that loved one into care. We are providing not only care and support to the resident but care, support and advice to the family and carers as well. That is something that Kathy will speak more on.

We are looking at that area. We can see that there are some huge advantages to early diagnosis and early intervention of people suffering dementia. One of the main barriers is the social stigma of mental health. As an organisation we are looking at different ways we can help support that too. We are looking at ways of bridging the gap between community and residential care. We feel there are some really good opportunities to do that.

CHAIR: Thank you. Ms Murphy, would you like to say something?

Ms Murphy : No, I am quite happy to go to questions.

CHAIR: We heard a lot from our previous witnesses about linking up services. How do you feel about linking up services with GPs and specialists? How do you see your role with all the other services around you and how do you link in to them?

Ms Murphy : Generally, we are not involved in the early diagnosis process, obviously. By the time they are admitted to us, even in low care, they are generally at the early to moderate stage of a dementia illness, depending on what it is. However, we do sometimes see people who are admitted with cognitive impairment—short-term memory loss. What is happening is that that link is not being put together; they actually do have a dementia but no one has made a diagnosis. The GP has not picked it up and the family just does not know what is happening. So they are admitted with those labels, or with those symptoms, if you like, but it has not been diagnosed.

CHAIR: Misdiagnosis, in other words.

Ms Murphy : Yes. Whereas if it had been diagnosed well before admission they could have had some intervention. They could possibly have had medication, they could have had management of the symptoms, they could have had more social interaction before they came in to us. We see that happen quite often, as well.

CHAIR: When you do come across someone who has been misdiagnosed, or has not been diagnosed, what do you do at that point? What is the process that you take to inform their relatives et cetera?

Ms Murphy : The benefit we have, compared to Professor Whyte, is that we have 24-hour seven-days-a-week observation. We also get family history when they come in. We ask them a lot, of course, but we have that 24-hour observation, which makes a difference. Professor White has a limited time—what did he say? An hour and a half? An hour and a half is nothing to someone with dementia.

CHAIR: Twenty-four hours!

Ms Murphy : Yes. It is nothing. You really need to see what goes on at night, in the afternoon, first thing in the morning. There is so much involved with someone who has dementia. So we do have that advantage. Straightaway we monitor behaviours and things that are going on. We also look at what medications they are on; we see how much they are eating or are not eating; are they drinking coffee all night—what are they doing? We get to see all those things, which gives us a much broader picture of what is going on. Then we have the problem of what we do with that. GPs often lack the skills or are unwilling to make the diagnosis to give that person the label. That is either because they are not sure whether that is the correct label or because of the stigma of that for the person and the family. We do sometimes have resistance in doing that. What we ask for is a referral to a geriatrician, who is usually Dr Lipski for us where we are, because if we go through the public health system we have to wait far too long to get a geriatrician to come. Now that Dr Lipski is in private practice we can get him to come. It costs the family $300 for him to come out but it is money well spent, because he does a full assessment that is really worthwhile. If he thinks they have dementia or Alzheimer's he will label them with that; he is very good. But the only way we can get that done, usually, is by using his services.

CHAIR: It was interesting hearing people talking about GP clinics or their doctors not wanting to label them. We have heard that a lot throughout this inquiry. Why do you think that is that so and, if they did diagnose them earlier, what would the differences be?

Ms Murphy : Professor Whyte talked about medications that are available if they are diagnosed early. There a couple of different types that act in different ways. They just slow down some of the symptoms. There is no cure, as you know, but they do help in that way. In that way they could be referred to the services that are out in the community and they could access them. Particularly for the families and the carer, they need so much more support than they are getting at the moment. The stress that Jennifer referred to, which we see when they come to us, is just dreadful. They are often depressed themselves. They are sleep deprived, they are incredibly anxious and guilty about everything that is going on, and a lot of that is because of lack of support but also lack of knowledge.

As Professor Whyte said, you cannot give them all the information all at once, but they come to us with very little knowledge so they are not getting the knowledge. It is not being given to them before they come in to us, anyway. Somewhere in the community or in that part with the GP there is education that is not getting through. It would help them a lot if they understood what was going on. I like your YouTube idea, because I think that is the way it is going: we have to use the technology that is out there. I think that is where that kind of thing needs to come from. With younger onset dementia particularly—

CHAIR: That is what I was going to ask you about.

Ms Murphy : The people who are in their 20s and teenagers now will be the people caring for those people, and that is where they are going to go. They are going to there and say, 'Well, my mother is doing this. What does that mean?' That are going to find that, so they are going to get a lot of information there. It needs to be looked at. I do not know how we can use it, but I think it is a really good idea.

CHAIR: You mentioned young onset dementia. Do you have any patients with young onset dementia? If you do, what are their needs?

Ms Murphy : We do not have many. We have a couple.

CHAIR: What sorts of ages?

Ms Murphy : We have one at the moment who has a dementia form of brain injury, and that is a whole different thing. Because we are set up for a frail, aged resident, if we get a younger person it is very difficult because the activities that you referred to are really geared for older people. They do not want to play bingo; they do not even want to watch bingo, so it is very challenging. We have to come up with other activities that they are interested in. At the moment most aged-care facilities are not really well set up for that. So we either change what we do or look at creating facilities that will cater to younger onset dementia.

CHAIR: That takes me to another group, those of a non-English speaking background or different migrant groups. Do you have any specific programs for them in your facility?

Ms Murphy : No, because we are quite culturally isolated on the Woy Woy Peninsula. It has never really come up. We have one lady in respite at the moment who is Russian; she has been in Australia for 30 years though. But it has never really been an issue for us because of where we are located. We are so close to Sydney but we are very isolated from other cultures. That may change.

CHAIR: Whereas, for example, in my electorate we have a specific facility which caters for the big migrant community. But we have still heard some horror stories where people, as they get older and develop dementia, lose their ability to speak English. You can imagine someone suffering from dementia and not being able to communicate at all. The problems are tenfold.

Ms Murphy : As you said, they revert back to their native tongue.


Ms O'NEILL: I think we need to put on the record here too, though, that even 15 kilometres can make a difference to the type of care that is needed. In Gosford, which is only a few kilometres away, for example, we have cultural diversity in the community in aged-care facilities. The reverting to the first language is an issue that they are trying to deal with right here on the coast, so these can be very specific issues that need a bit of a variant in response. I guess every individual needs something a little different, don't they?

Ms Murphy : Absolutely.

Ms O'NEILL: I want to thank you for coming along and making this contribution to the public debate. It is very significant that we get a regional perspective, and you have already indicated how different this region is in some ways from others. One of the things that seems to be a problem across all of the regions, whether it is the city or the regional areas—even more so in the remote areas—is access to respite. You made comments about providing respite care in your opening statement. I wonder if you might expand on dementia and respite and if there is any connection with early onset, or is it only respite when people are in the moderate and developed stages that you are engaging with?

Ms Eddy : At the moment we take respite for short periods of time—from two weeks up to six weeks—but there is a need there to be able to take emergency respite: to take people for a couple of days or even to take the people when the carer needs to go for an appointment or something like that. There is not the funding in the residential aged-care model to be able to do that. We can see the opportunity there for residential aged-care facilities to provide that type of service that would enable people to remain in the community longer if we could bridge the gap between community and residential care more than we are.

At the moment you are in residential or you are in the community. If we could sort of mould that in together more, we could keep people in the community a little bit longer and then gradually introduce them into residential aged care. I am in the same situation personally at the moment where the person declines, they go to the doctor, the doctor says that you have to them into residential aged care, you ring up and they tell you there is a bed available now and you have to move them tomorrow. If we could bridge that gap, if we could slow that process down, it would be beneficial to the resident and beneficial to the family to be able to do that.

CHAIR: There is a great example in my electorate, the St Hilarion Nursing Home. It was started by the Italian community in my electorate, and they have some pensioner groups which have their meetings at their residence with food and a whole range of things. They interact with the people who are residents, and most of the people who are part of the pensioner association are quite healthy and often younger in years, but they are already very familiar with the activities and the people. They know some people and they all interact for when that change may be needed at some stage in the future. I think that is a great way of doing exactly what you are saying: getting them in gradually.

Ms Eddy : It is. It is very important to do that, and we find, being a community facility, that we do just that. The community is so involved in our organisation and supports our organisation so strongly, as Deborah would know because she has been to our facility, that we are able to do that. Quite often, when somebody does move into care, their neighbours, their friends or people from the organisation that they have been involved with are there. That is a really important aspect of it. Getting back to the respite, I think it would be beneficial if we could actually bring people in on short term, get them used to that concept of being in care and bridge those gaps in community service, where residential could become a little more involved in those late stages of community care.

Ms Murphy : It would give us an opportunity to support the carer family as well, even if they were only there for a 24-hour to 48-hour emergency respite. It would give us a chance to talk to them, to give them some education or to talk to them about what problems they are having at home. This would enable them to stay at home longer to care for their relative with dementia as well. In the long term it works out better for them and also for us when they eventually do need to come into permanent care. It would help in a lot of ways.

Ms O'NEILL: One of the issues we have heard about today that seems very significant is integration with community support, care and the GP. In terms of being in a facility, what are the interactions that you have with medical practitioners? How easy is it for you as an agency to set up a referral because you think dementia is an issue? How easy or difficult is the pathway of integration out to care and integration of that care outside the facility with regard in particular to dementia?

Ms Murphy : What do you mean? Do you mean referral to the geriatrician?

Ms O'NEILL: Yes. If you see somebody and you think, 'Well, we're pretty good at watching this and we think that there is a sign of early onset dementia,' how easy is it for you to push 'go' and start a process of assistance or diagnosis?

Ms Murphy : As I said before, it depends on the local medical officer. It depends how receptive they are. Some doctors will listen to us and some will come in for five minutes and ask, 'How are you going today?' The patient will say, 'I'm fine, doctor. I'm really well.' And then off the doctor goes, saying, 'No, they are not depressed. They are not anxious. They are okay. I will see them in two weeks.' So you have that kind of thing where they do not listen to us, which I think is because our knowledge as aged-care nurses sometimes is undervalued. As I said, again, we have 24 hours a day, seven days a week observation, so we have all sorts of nurses on all sorts of shifts documenting this sort of information, but the doctor will come in and say, 'No, no. He's fine. He does not need anything. He does not need to be referred to anyone.'

CHAIR: How do you deal with that?

Ms Murphy : It is called persistence. We have to persist with it. Sometimes we have to go around the doctor and go to the family. The families sometimes have more faith in us than the doctors. So I will say to the family, 'This is what we think.' They are usually aware anyway because we talk to them frequently. I say, 'This is what is happening at night. These are the behaviours we are seeing. We would really like to refer them to a geriatrician; however, the doctor is not very keen on the idea. What do you think?' They usually say, 'No, that is fine. I think that is a good idea.' Then we go back to the doctor and we say, the family has requested that this person see a geriatrician.' Normally that will do the trick. But we should not have to do that. They should listen to us in the first place, but sometimes we have to go around them to get to where we need to be.

Ms O'NEILL: One of the points that was just made by Professor White and Dr Gupta was about a centrally organised spot where anybody who is related to the person or caring for the person who thinks that they may have early onset dementia or perhaps advanced dementia can make a call and set in train a set of processes. How would that change the nature of what you are able to do for the clients that you look after if you were able to just go to a central place without having to go through the GP?

Ms Murphy : That would be great. We could use it also, I am presuming?

Ms O'NEILL: Yes, absolutely—anybody could.

Ms Murphy : If we could ring, I think that would be wonderful. You would have to, without putting the doctors out, somehow make them know this was available to the staff and that we could access that. The local doctors will not like it. They will not like to be bypassed in any way.

Ms O'NEILL: Why is that?

Ms Murphy : Because they like to be in control generally. They like to be involved in what is going on. They like to make the decisions about the care, which is their right, in a sense. So you would have a little bit of an issue with that, from a practical point of view—not from us, but from them.

CHAIR: Thank you very much for your submission. Like I have said to all of our other witnesses today, if there is something that you feel we did not raise today and you feel it has to be raised then please put it through to the secretariat. And, vice versa, if there is something else that we want to ask you we may get back in touch with you.