MULDOON, Mrs Deborah, Manager Service Development, Life Care

ROBERTSON, Mrs Jacinta, Manager Respite Service, Life Care

SALOTTI, Mr Peter, Family carer and volunteer, Norman House

SCHILLING, Mrs Raelene, Private capacity

WHITEHORN, Mrs Joy, Private capacity

Committee met at 10:41

CHAIR ( Ms Hall ): I would like to thank you very much for our visit Norman House. What you do there is very impressive. I think it is a model for other services that deliver respite to people that have dementia and those providing support to their carers. I was very impressed with what I saw.

This is a public hearing for the inquiry into dementia: early diagnosis and intervention. Australia's population is ageing and with it comes the increased rate of dementia in the community. Nationally, it has been predicted that the prevalence of dementia will triple by 2050 making it a significant public health issue. The committee's inquiry intends to focus on how early diagnosis and intervention can play a role in improving the quality of life, and in improving social and community engagement.

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 maybe regarded as contempt of parliament. Do you wish to make a brief introductory statement before we proceed to questions?

Mrs Robertson : I am the manager of respite programs for Life Care. I manage day and overnight NRCP programs as well as other day respite options and a unique workplace engagement program, Side By Side that provides respite for carers of individuals with younger onset dementia.

I have worked in this role for approximately five years. I would like to start by thanking the committee for providing the opportunity for our carer group to be heard today. As a representative from the industry, I also value this opportunity which has allowed me to act as an advocate for the group and work towards our aim of supporting and improving outcomes for carers and care recipients.

Life Care is a South Australian aged-care provider that deliver services in residential care, retirement living and community care programs, including packages, a wellness centre and cottage respite. A significant number of our clients have a diagnosis of dementia. We proudly run programs that target support for these individuals and their families. Life Care believes that as an organisation our success comes from adopting the philosophy of 'live every day'. Our mission statement reflects this and is expressed as such: 'Our purpose is to partner with people to embrace life and live every day.' This belief is consistent with the inquiry's focus and we believe that, with our expertise and dedication to support individuals with dementia, we are in a position to provide some insight into how early diagnosis and intervention can have positive outcomes for the individuals we support.

Representatives from our carer group have a number of issues that they would like to present day. These include: Carer Allowance and the bonus payment, early diagnosis and GP education, early intervention and a lack of centralised information, the ACAT system, CDRCs—which are Consumer Directed Respite Care packages—standard of the workforce, respite funding, and entry into residential care. Today I would also like to highlight a number of issues that are apparent as a service provider that relate to the diagnosis and intervention in dementia care.

A large number of carers describe a very frustrating and stressful path towards diagnosis of dementia, especially individuals with younger-onset dementia. Stories of GPs who are dismissive of symptoms and concerns are common. There is anecdotal evidence of the need to improve the awareness and understanding of dementia within our medical and health professions, especially for individuals with younger-onset dementia. With regard to community packages, a number of carers often raise the concern of their inability to access a community care package. They have reported that ACAT assessors have its told them to expect a 12- to 24-month wait for an EACHD package to be available. That is once they actually have the ACAT.

With CDCs, there are changes expected in the near future, but until there is an increase in the available funding these concerns will continue. A community package can improve health, independence and the general well-being of both the carer and the care recipient. The need to reduce these long waiting lists for support is obvious. Without support in the community through packages or flexible respite, carers are often forced to seek support in residential care at a much earlier stage, which of course increases the financial burden on the health system.

With regard to NRCP funding, our programs are aimed at supporting carers and providing a flexible model of care that promotes physical and cognitive well-being for the carer and care recipient. Our NRCP is funded for overnight options; however, the current funding only provides four nights per week respite. With this model, we do not provide flexible choices for carers as we dictate nights that can be accessed due to funding limitations. Our current program achieves 110 per cent occupancy due to the high demand, so we have worked with external providers to provide seven-nights-a-week respite options. Within the first night of these increased hours, we achieved greater than 90 per cent occupancy. We are proud to have achieved increased options and flexibility. However, the funding is only for a limited 12-month period and, due to the ongoing high demand for our programs, we have a three- to four- month wait for overnight stays.

These outcomes demonstrate a successful program that provides respite options that are supportive to carers. Our waiting lists demonstrate a need to expand our model of care and, with our extended model only having confirmed funding until August, there is a need to urgently review the funding and the demand for extending the current model if we are to aim to provide support and intervention that is appropriate for dementia care.

With regard to identified target groups, individuals with younger-onset dementia have been highlighted within Living longer, living better. As a group, gaps in service delivery have been identified. We support a number of individuals with this diagnosis and have identified a need for specifically designed programs of support and intervention in South Australia. The complex needs of this group from diagnosis to support programs have not been appropriately addressed within our state. With the anticipated increase in diagnostic rates, appropriate intervention and planning are urgently required.

Traditional respite options for older individuals are not appropriate or appealing to individuals with younger onset dementia. These individuals do not often meet the criteria for traditional community programs and access to residential care is extremely difficult due to funding being aimed at the individuals over the age of 65 years.

An individual with dementia has a very individual path as they move from early diagnosis to moderate and advanced stages. Irrespective of age, there needs to be flexible models of support in both community and residential settings to meet their needs. For example, an eighty-year-old with some early signs of cognitive decline will not fit into a program for individuals with advanced dementia nor would it be stimulating or appropriate. Service providers must have flexible management of programs and the skills to identify and address each individual's needs. The models of care are often restricted due to funding and staffing constraints rather than the individual's care needs being the focus.

I would like to put forward recommendations that include an increase in funding for community packages that will assist carers to provide appropriate intervention that is aimed at the promotion of independence and wellbeing. The public health approach to dementia care will have benefits for the individual, their families, the community and the health system. Increased funding would allow the expansion of successful respite programs that have evidence that they are meeting individual needs and that are providing appropriate intervention and support for individuals with dementia and for their families.

South Australia needs a specific younger onset dementia program to provide the appropriate support and intervention for this identified target group. Funding for a stand-alone community day and overnight unit as well as funding for residential support for individuals under the age of 65 is essential if we are to address the identified gaps in service provision. An education program for GPs and the health profession with the aim of improving diagnosis and management of dementia, specifically younger onset dementia, should be explored. The Medicare Locals network may provide a forum such for programs to be initiated.

In closing, I would like to once again thank the committee for the opportunity to raise our concerns and I hope that forums such as this will be able to achieve better outcomes for carers and the individuals with a diagnosis of dementia.

CHAIR: Thank you very much for your fantastic presentation. I think you have gone across all the areas that we talked about this morning.

Mr GEORGANAS: I know some of the things I am going to ask we have been over before but it is important that we get them on record so they form part of our evidence when we are coming up with recommendations. This morning we visited Norman House and saw some of the great things you are doing down there. Could you explain to the committee some of the dementia specific programs that you offer.

Mrs Robertson : Dementia specific programs within our respite options are extremely varied. We like to push boundaries. As you saw this morning we have done swimming programs. We do cognitively stimulating different activities that are all aimed at promoting an individual's connection with the community, and their physical and cognitive wellbeing. If you think of anything that you like to do as an individual, that is what we like to offer the individuals with a diagnosis of dementia. We do not see their diagnosis as a restraint for the choices that we offer them. Our programs are very much aimed at what they would like to do rather than what we put in place. One of the things we do is we do not have set programs every day. We do not run bingo. Bingo and dementia seem to go hand-in-hand. We do not have bingo every Thursday afternoon because the group may not want to play bingo. We go with the flow. We do what is appropriate for the weather, the individuals and how they feel on the day. Flexibility is the key.

CHAIR: Do you have any partnerships with employers and other organisations in the community?

Mrs Robertson : Yes we do. We are very well known for our connection with Bunnings. Working with commercial organisations has proven to be very beneficial to the services and the models of care we can provide. Through Bunnings we run our younger onset work engagement program. We also run monthly interactive programs with daily respite programs. We also connect very closely with Unley council. As we were talking about this morning, we are about to do a gardening program along the tramline with Unley council. You have to think left of centre. We have done things with the tenpin bowling association. It is all just about exploring every option we can look at.

Mr GEORGANAS: What sort of training does your staff undergo, and what sort of refreshment training does it undergo to refresh and pick up on new things that are happening?

Mrs Robertson : Within our respite options I am a registered nurse but, as we said this morning, we do not provide nursing care when working with well people. My staff are all carers who have done Certificate III in Home and Community Care. We also do some senior first aid training and we do a lot of leisure and lifestyle ongoing training to equip them for the activities. We also access the Alzheimer's Association for a lot of specific training—anything from challenging behaviours to younger onset dementia activities—and that helps enhance the programs that we run. We have to comply with a lot of standard ongoing training, including manual handling, fire training and safe food handling. We are also doing some palliative care training. It is a continual flow of guidelines for the industry as well as different training models we feel would be beneficial to our group. Some of our staff need computer training, so it is all about looking at our staff as individuals.

Mr GEORGANAS: Earlier, we spoke with some of the carers about the process they went through for the diagnosis of the person they are caring for. How important is that early diagnosis and early intervention? From what you see from clients that come to you, are they being diagnosed later than they should be?

Mrs Robertson : Very much so. By the time people get to our programs they are quite often disillusioned with the health system, they are angry and they are frustrated. They have gone through a path of dismissive behaviours from the health profession—of course, this is generalised. The diagnosis process, from when they walk into their local practitioner through to diagnosis, can take years. I have say to people: 'Imagine if it were you. Imagine if you thought you or your partner had memory issues. Imagine how hard it is to make that initial contact.' There will obviously have been symptoms for a long time before they get to that point. Therefore, their health in that time is declining, and when they get to us they are very wary and concerned. We have preconceived ideas of respite options and residential care. We have this image within the wider community of negative stereotypes. So if we are getting someone who is already that negative and troubled through the diagnosis process then we are starting with a setup for failure. We need to try to turn that around, build up the relationships and start to form some trust with them. The process of diagnosis is a very overwhelming, disempowering process.

The Alzheimer's Association has put in link workers over the last couple of years. Once they are diagnosed the support can start from that point, but until they get to that point it is quite an interesting process. We are running public education programs with our Side by Side project where we have information and resources in a hardware store to take away from that fear of walking into your GP and saying, 'I think I've got a problem.' This will, hopefully, start the referral process a bit sooner.

Mr GEORGANAS: That is the Bunnings program?

Mrs Robertson : Yes. We see it as part of our role to do public education. We do not get inundated, but if we reach one person regularly then it is a very good outcome for demystifying the industry and the disease process.

Mr GEORGANAS: This morning we saw some of the activities you do; everything from swimming to catching a tram. You spoke about some of the gardening proposals. How can things be put in place to increase that community engagement for people with dementia, and how important is that?

Mrs Robertson : We need to challenge ourselves as service providers. We need more funding to expand, but as service providers we need to start looking at ourselves and challenging what we are doing.

As we spoke about, it is not about the people who come to our programs fitting in with what we run; it is about us fitting in with what they run. So that flexibility and the ability to adjust and meet the needs of individuals is the primary reason for our success and I think, if we can spread that belief it would be a very good thing. A lot of organisations are doing this. We talk about individually focused care, but it is something that you need change the way that we are implementing our programs to live that.

Mr GEORGANAS: Can you just elaborate a little on the flexibility that you offer—just an example?

Mrs Robertson : We spoke this morning about check-in times, check-out times. We do not have set times. It makes our working day chaotic at times but, if we are there for the carer rather than the carer fitting in with me, I should not be dictating that they need to be there at two o'clock for pick-up or check-in and to pick up in the morning at 10 am. We should be looking at how we can assist them rather than how we dictate to them.

We spoke this morning about how we do not have get-up times. We do not have bedtimes. We do not have breakfast time. It is about what works for the individual at home. We try to embrace that and give them the flexibility to do that. It is all about standing back when somebody has had a shower, if it takes them five minutes to put their socks on, and letting them take the time, encouraging them to remain independent and promoting their independence so they are healthier.

We have had carers report to us that people have stopped taking antidepressant medication once that connection has been made and built on and generally better reports of feelings of wellbeing, so we have this anecdotal evidence and we need capture that in a more formal way to document the outcomes that you can achieve.

CHAIR: I might direct my questions to the three family carers: if each of you could share with the committee the challenges that you face and how the service that you have been receiving has helped you meet those challenges and improved your lives or otherwise?

Mrs Whitehorn : I do not know where to start. Our problem originally was getting a diagnosis—and I know that it is very difficult for younger onset people but it is also very difficult for older people. GPs can be very patronising: 'You're getting on a bit. What else can you expect? Yes, well there's nothing you can do for memory loss,' as they see you out the door.

We are aware that, if it is diagnosed early enough in a lot of cases, medication can slow down the symptoms, which it has done in our case.

We need our GPs to be better trained and to be referred onto specialists and also very importantly to be referred onto the Alzheimer's association. This is not being done, and the Alzheimer's association has got so much assistance and information out there. I was recently speaking to a friend of mine whose husband has recently been diagnosed with dementia. I asked: 'Have you made contact with the Alzheimer's association?' She said, 'No, because he's got dementia; I can't go there.' So I had an education program there.

The GPs are our first line of contact. If they are not educated and do not inform or assist us, we can spend years trying to get that help. I have probably wandered off from the point here. I had some notes—perhaps if I could carry on with my notes it might be easier for me.

Residential care: unfortunately, we are coming to the stage of having to look for residential care, and this has been an absolute nightmare. Firstly, to get an ACAT assessment, I put my name down with advice from the Alzheimer's association—it would be about seven years ago now—but it was six years before I got the ACAT.

CHAIR: You are saying it is taking six years to get an ACAT assessment.

Mrs Whitehorn : It did. In the end there were tears on my behalf and begging. I badly needed assistance with night-time care. I am eligible for six weeks, but I could not get that without an ACAT; I could not get the ACAT. So you are in no-man's land. I eventually got the ACAT. When the paperwork came out, according to them I had been waiting for 12 months, so something was not quite right there. Looking at residential care, we badly need paperwork to be standardised. It is a jungle. Every facility appears to have different needs in paperwork; there are different forms. This is so time-consuming. A carer is so time poor and, in a lot of cases, sleep deprived. To be told that we need to put our names down in probably 10 different places to try and get into residential care is so daunting, especially with the paperwork. Some of our residential care facilities do not allow us to visit. Some allow visitors once a month. This is also another juggling session: 'Can I get to this place on the first Tuesday? Is my husband in care on the last Friday of the month? Which ones can I try and access?' So, instead of it being an easy process to even get our names down and look at residential care, it is a real headache.

CHAIR: You are saying there are a lot of barriers to accessing care—barriers as far as ACAT is concerned and barriers as far as the facilities are concerned?

Mrs Whitehorn : Yes. I believe all residential care have accreditation. I do not know how often that is; it may be every three years. I really wonder whether the entire areas are inspected at this time. I find it very difficult to believe that it does that, owing to an unfortunate personal experience with a residential facility. The other thing I would like to bring forward is that we have been trialling consumer directed respite care packages. They sound very good and I was so excited when, approximately two years ago, I was offered one, in July 2011. As my husband is up five to eight times during the night, this is one of the best ways that I can be assisted with overnight care. I knew I could do that at Norman House.

This year, although receiving the CDRC package, I was not able to use the money for respite at Norman House as it was seen as double-dipping, according to UnitingCare Wesley Bowden. In July 2012, I contacted my MP, Mr Steve Georganas, and also the minister for health, Mr Butler. Having met him at the Alzheimer's association, I felt that he did have carers at heart. I received letters back from them, but especially the one from Mr Butler interested me, in September. He said: 'I can confirm that you are able to access overnight respite services from Norman House using funds from your package.' Since then, the health department, on 28 September, advised that if I used the package at Norman House I would be paying over $300 a night instead of the $40 that I pay out of my own pocket. This means that, instead of paying $160 for four nights respite, I would pay over $1,200 for four nights. The package is only a total of $4,200. You do not need to be a mathematician to know that there is no joy for me here. UnitingCare Wesley Bowden, who handle this package for me, seem unable to do anything. However, they did make the helpful suggestion that I seek help elsewhere, not at Norman House.

The girls at Norman House are wonderful. They are his friends. He feels safe, secure, happy. He loves the activities, especially the table tennis. He has been going there for several years and has made friends there. If this package is consumer directed, as I am told, I feel that I and others should be able to use the money in a way which is the most help to us the carers.

Another point I would like to bring up is the standard of some agency carers. Agency carers seem often to not have any particular standards to meet. The condition of some vehicles is not good. The dress code sometimes does not seem to exist. And some do not seem to understand the needs of people with dementia. Luckily there are also some excellent people but carers never know until their carer arrives what that person's capabilities will be. It seems impossible, even when booking weeks ahead with the respite centre, to be able to get a person you have had before.

I would like to thank you for the opportunity to bring our concerns to your notice. Unfortunately, any changes to happen in the future are unlikely to be of assistance to us. But we hope and pray that maybe the road can be a little bit easier for those carers who will walk in our footprints in the future.

Mrs Schilling : I am a carer for my husband who has frontotemporal dementia, which has its own special challenges as we talked about this morning: not talking, not communicating, not being interested in anything. In the early days he had temper tantrums and became verbally violent. Happily that has passed. I would like to make three quick points.

Firstly, the carers allowance is paid to assist carers to look after their loved ones at home—saving the government billions of dollars a year in nursing home costs. I have been caring for 11 years and the allowance has gone from $90 a fortnight to $115.40 per fortnight, an increase of $17.40, which equates to $.34 an hour. I think this is a total insult to carers. I think something needs to be urgently done about this. I am not quite sure what the carers allowance is supposed to pay for because it certainly does not cover respite. It does not give money to the carer for anything pleasurable for them to do so I am not quite sure what it is meant to do. But I really do think it needs to be looked at because it is insulting. The last increase we got was for $1.40, which is quite insulting.

Secondly, I, like Joy, found ACAT very difficult to access. You need this for the 63 days respite you can get in residential care. I put my husband's name down for residential care and you cannot do it without an ACAT assessment. These things are needed but are so hard to get. We should not need to end up angry and in tears on the phone to get them.

Thirdly, funding for the respite houses like you saw this morning is badly needed because I think to put people in residential respite certainly in the beginning of their dementia is not fair for the people who are far more advanced.

CHAIR: I notice that you are reading from a written statement. If you would like, you can table them and they can become part of a submission. Would you like to do that?

Mrs Schilling : They are a bit rough.

CHAIR: That is alright.

Mrs Schilling : I think we need these as a halfway house between home and residential care and are a great benefit. Thank you very much for the opportunity.

Mr Salotti : I am a family carer. My wife is in full care and I am also a volunteer with Norman House three days a week on this fabulous side-by-side group that goes to Bunnings. I think there has to be a lot more early intervention so that the people get a chance in life to do these programs and extend their lives.

CHAIR: Thanks very much, Peter. Thank you all so much for your wonderful submissions. It sets the scenario for us to today looking at it from the perspective of the provider of the services, family, carers—you have got something there?

Mrs Muldoon : I would like to table this: it is from Garry Leith, who is another carer. He has to look after his wife who is 59 years old and has early-onset dementia.

CHAIR: Thank you very much. Is it the wish of the committee that the submission be accepted as evidence? There being no objection, it is so ordered. That is done; they will go up on the website as submissions.