Consumer Engagement in the Aged Care Reform Process

Canberra Consultation

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18 October, Southern Cross Club, Woden, ACT
Panel: Glenn Rees, Gayle Sweeney (Aged Care Business Manager, Anglicare)
Chair: Jane Allen (CEO Alzheimer’s ACT)
Guest: Evan Mann (Carers Australia)
Number of attendees: 45

Main Themes

Primary Care

• Difficulty getting a diagnosis particularly for those with younger onset dementia
• Importance of GP listening to family carers about changes they have noticed.
• Link between early diagnosis and keeping people at home for longer

Information and Access

• Difficulty getting access to information
• Wait times for assessment and access to packages
• Artificial barriers between state ACAT services
• Need for a case management model

Community Care

• Changing level of needs leads to consumers having to change to different packages with different service providers

Residential Care

• Quality of care is often poor
• Importance of physical environment
• Importance of communication with staff
• Problem of not being able to easily switch between providers.

Respite

• Need for flexible respite where providers are not calling carers to seek help with behaviours or medication

Workforce

• Staff levels, and training are of concern
• Need for pay parity to attract good staff
• Question of how entitlement will work unless there is more staff to provide services

End of Life Care

• Importance of dying at home with dignity
• Focus on quality care at end of life
• Need for greater awareness about advance care plans

Support for Carer

• Need for support to assist with depression
• Importance of community awareness and supportTop of page

Comments

Primary Care

My concern is if we want to keep people at home, then we need to get in early with an assessment. My husband has early onset dementia. I made an appointment with the GP and listed out all the signs I had noticed. I asked that he do an assessment of him. But when it came to his mental assessment which was performed by the nurse, she said his cognitive skills were good. She said he had slightly impaired social skills. This is not at all what my husband is like. The longer it goes without diagnosis the worse it gets.

My husband was diagnosed by accident. I had noticed changes but you think it is just old age and being forgetful. It came to light when he was about to have knee surgery. He was sent for extra tests that revealed high red blood cell count affecting cognitive abilities. After 6 months, and being sent to a clinical psychologist, and then to a neurologist, it was still like walking into a brick wall. Finally we were told it is a degenerative disease, Alzheimer’s, and then we were sent home with no idea with what to do next. The whole experience was slow; we were diverted onto something that was not the main issue.

I noticed the difference with my husband’s behaviour. I rang the psychiatric ward of the hospital. They referred me to the geriatrician who came to the house, made a diagnosis and then referred me to the dementia group.

For us we went to the GP, then went straight to geriatrician, then to Alzheimer’s Australia (AA), and never looked back. AA said come along to the ‘living with memory loss’ course, and it started us on our journey.

I had trouble getting diagnosis for my husband Chris, he has younger onset dementia. I was referred to a neuropsychologist. He said he could have Alzheimer’s but that they didn’t want to diagnose young people with it so they told him he had depression. My husband said ‘I am not depressed’ but they took no notice. Chris was given the wrong medication and denied access to services. If we want to keep people out of aged care and stay at home longer we need the right diagnosis.

My late mother enjoyed good health and visited her GP infrequently, so her GP didn’t detect the signs. My GP (in our social network) observed her and suggested she get an ACAT assessment. She was diagnosed with dementia and was placed in a dementia hostel.

Information and Access

My pathway into the services was fragmented and chaotic, serendipitous. I learnt everything by accident. Going to the social worker saved my life, she sent me off on the right path. But what would have happened if I hadn’t encountered the social worker

A lot of EACHD packages are going vacant. People don’t know what services are available and have to wait too long for an assessment to get access to services. This leaves providers with services they can’t provide.

People can’t navigate the aged care system. This comes down to many hours spent on phones explaining to people how to get the right services.

In NSW the ACAT team has no waiting list but there is no ability to use it in the ACT – this seems incredible. The barriers between services are huge.

(PWD) I have a mix of problems. For me it is vascular dementia, diabetes, and a string of other things that is common among older Australians. I get a lot of help from Alzheimer’s and diabetes association, but these two associations don’t talk to each other. There are a lot of things happening but they don’t add up to what I need.

Under the current health reform process there is a great opportunity for dementia to be put on the agenda of newly established Medicare Locals.

I would like (the government) to consider a case manager that works with the family. So you have one holistic management process. I could then go to the person who knows me, and when I get depressed I would know what to do. I need someone to develop a relationship who knows me, the family and circumstances.

Community care

I have a client who is unhappy as she has lost a service provider who did things for her. Because her needs increased and she had to go on a different type of package she lost someone. Top of page

Residential care

When the time came for mother to be put in aged care hostel, my sister who is a doctor relied on medical nurses (for advice). My sister would also drop in at random times to double check. We don’t trust the system. We need to do something about not improving the situation.

I researched so many facilities to the point I went to volunteer 2 days to get a feel of how the staff were treating the patients. I chose one, and after only 3 days I found mum in a soiled bed, and dinner left on the side table. She needs to be fed; she has dementia and can’t do it herself. On day 12 the night staff forgot to pull the high rail up and she fell out of bed, they didn’t even call the ambulance to see a doctor

We thought of community care and people coming in. But I don’t understand the packages. So my sister and I became the package. People would say do you have meals on wheels; no it’s my sister Mary. But something had to give, so my mother went into respite, and she hated it. She is CALD, she is Asian. She expects her daughters to care for her. She didn’t want strange people coming into her house. So we continued until it couldn’t happen anymore. Then she went into residential care. We chose the right place through going to different places for respite

My husband is in residential care now. There is great communication with staff. I like the layout of the place. In so many places there were locked doors and blank walls. I also like all the activities and outings.

My husband had Younger Onset Dementia, and I knew he would have to go to care. I visited a number of facilities and wasn’t happy with any of them.

My mother was in a couple of facilities before I eventually found the right home I was looking for: skilled professional staff 24 hours a day. I wanted to know that people knew what they were doing. I wanted them to look at my mother in a holistic way and I wanted to see the residents happy and content. Those that could were busy, and peaceful, and there were sunny places to sit. I think you have to judge a place by the smell test.

My grandmother was lucky she had me who worked in aged care. A lot of people ask around, in the end we had to take the choice that was available to us.

The problem is the lack of choice, once you make the decision you are stuck with it. If you pick it and it is the wrong place it should be easy to say sorry we want to go somewhere else. People feel they have to get decision right because they have to stay.

Respite

Respite is hugely important. I am younger and had a career which I had to suspend. No other family members were willing to do anything. I would not have survived without places like the cottage. It must be cheaper to keep people at home so I would imagine more places like the cottage where you can have short term respite – beyond the 63 day system, it is absolutely crucial because other wise you burn out. If the carer collapses it is a disastrous situation.

Husband has Parkinson’s, dementia, blind, and arthritis. I have to go home now to give him his tablet. I agree that respite is important, but it has to be flexible, sometimes the carer that comes can’t give medication.

Workforce

Without pay parity we will not be able to keep experienced people in the aged care work place. We want people to have good care and feel that their families are being looked after. DoHA set a whole lot of standards but we are battling getting adequate staff.

More education is needed for staff. I asked (the staff) why one lady wears one slipper and one shoe and I was told it was because it was just her personality, one of her peculiarities. I looked and she had an infected toe, the staff didn’t even know about it. I have a great concern about residents with dementia; they must be treated as individuals, and treated with care and dignity.

The NDIS report came out the same time as the PC report. Just the NDIS is going to require double the workforce we have already got, it is a huge issue. If nothing happens (to increase the workforce), for all the good intentions there will be no one to provide the services we want. The government will need to provide the funding and training for staff.

It shouldn’t be that everyone who wants to work should have to have all these qualifications. You should be able to go to Jo who has an interest and wants to provide care and pay him to support me.

Entitlement is a wonderful idea. But, we can’t afford more staff and we can’t find them. Anyone paying off a mortgage is going to get the best pay they can find. We won’t have (entitlement to care) unless we have better pay, and improve the skills of the carers. I am concerned about the RNs retiring soon as there will be no one there.

Employ people from our own communities, especially in CALD, remote and indigenous communities, especially for young people who don’t want to attend respite with older people. It would be great if we could get cash and employ people from our own communities.

End of Life Care

We need more resources in palliative care, more skilled workforce, knowledge and awareness of palliative care and dying in general. 40% of people would like to die at home; only 16% do, so it is a matter of choice.

My daughter came to us saying, ‘what is your end of life plan’? Her and her husband had already done it!

When mum was dying we went to see her, she was on her back, her mouth wide open, looking distressed. She was on her back because of bed sores, but we were not worried about bed sores at that point.

I have just organised my own funeral but I haven’t thought about the rest. I really should think about an advance care plan.

Support for the carer

My plea is for more support for the carer. The depression that I suffer as a carer can be very bad. You can’t deal with the person with dementia, and you are also liable to do something that you usually wouldn’t.

We need community awareness and start to share responsibility around. When you are in a situation of needing help, often there are lots people around but they need to be asked. This works much better than paid support. Top of page

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