Consumer Engagement in the Aged Care Reform Process

Geelong Consultation

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26 October, Geelong yacht Club, Eastern beach Road, Geelong, Vic
Panel: Glenn Rees, Ellen Skladzien, Jack Sach
Chair: Darren Cheeseman MP Federal Member for Corangamite
Number of attendees: 84

Main Themes:

Community Awareness

• Lack of community awareness of dementia
• Suggested TV program or school education program

Information and Access

• Regional differences in access
• Requirement to switch service provider because changing package
• Importance of social activities
• Barriers in what packages will provide

Community Care

• Importance of staff consistency
• Need for exercise programs

Respite

• Importance of emergency respite
• Respite that provides social interaction for person with dementia

End of Life Care

• Importance of setting out advance directives
• Concerns about wishes not being respected

Support for Carers

• Importance of AA support programs including living with memory loss and memory lane cafe’s
• Carers allowance concerns
• Size of bond and need for reassessment

Acute Care

• Person with Dementia not being listened to because of having a diagnosis Top of page

Consumer comments:

Community Awareness

I am concerned that the average person has very little understanding of Alzheimer’s. I find that when I go to the shops with Carol, I talk to someone and get confused, and the lady behind the counter doesn’t quite know what to do. If only the average population had an idea, there needs to be a much stronger approach to the average population to help us.

The majority of people with dementia typically look normal. It is difficult looking at them realise there is something wrong.

I have had to explain that a people need to have more tolerance and understanding of the person of dementia. It was just because they didn’t understand; they thought they were just being stubborn. So obviously it is not getting out to people that you need tolerance and understanding.

I would hope to over come this problem of making the public aware would be for television to show the average person what it is, how it is and what to do. There would only be two stations that would cover such a thing, the ABC and the SBS, but that is far, far better than nothing. It gives an opportunity for people to talk to other people, and you discover people you can help. In other words spread it around, not only to politicians but to everyone, to help us.

I would love to see some form of information taken to high schools, because when patients go somewhere people don’t recognize that they have Alzheimer’s. They don’t realise he has something wrong until they come to the home. Our children would also love to learn more about their father too, they are used to learning and having professional people to learn from.

Information and Access

Recently got a community care package with a multicultural care service, they have been great. Access to that isn’t easy, we were lucky.

We lived close to Coffs Harbour. It took us 12 months before we got to speak to anyone in the hospital system. Now we have come back to Victoria. I immediately contacted the memory clinic here. It took until 4 months before Coffs Harbour responded to Geelong to send down my husbands details. We have had a fantastic experience here in Geelong.

After our first ACAT assessment, we had house cleaning once a fortnight, I had a gardener, and I had an OT come out. I felt the OT had too much on her plate. We had a second aged care assessment. He was then classified as an EACHD. Then I had to wait for another service provider. They couldn’t tell me how long it would take because there was a waiting list. The service providers just run down the list and take who they want, its not first come first served. I want to know why there is a discrepancy that people have to wait so long.

When I first found out that I had Alzheimer’s I just drifted along and was in a form on denial. When I did become aware of it I became a real mess. It was Ruth who gave me the professional support and the understanding.

Because the behaviours are not following in a particular format or time of day, the support we need depends on the time of day.

We need more social engagements, so they can look forward to going out.

It’s just the floors and the toilet and the shower that is it. They won’t do any heavy things, where old people can’t get at. It’s only an hour and a half so they can’t do that much.

In the past they would only do half a mirror because she can’t reach any higher. She won’t vacuum under the chairs, there is no consistency

Community Care

I would like to see the same person going to the same client. The client finds it very frustrating to have to explain where everything is. One person to one client.

Exercise programs for older people. My mother is 88, she has no incentive to get up and do anything. She will loose the use of her legs.

I was diagnosed with Alzheimer’s about 2 years ago, one year, lucky I have a carer! I was told to keep exercise up, I go to a gym. I think it is very helpful. I t helps my strength. I was concerned I wouldn’t have the strength to sail any more, we started again and so far so good.

It’s not rocket science, we just need more support. Top of page

Respite

I was taken to hospital with an asthma attack. The help from Southern Cross care to help care for my husband was absolutely amazing. It gave me confidence that if anything happens to me that David will be cared for.

I got stuck out of down due to a car problem. I called Carers respite, I dialled the 1800 number, they got all my information, they relayed it to Geelong where my partner was, and it was terrific.

One of the best things I have started to do with two of my mates is we go out with Mercy Care. We have a wonderful time. We have a stroll and have lunch together. Our wives have a decent break from us.

There needs to be day care centres, where it gives us respite, but it gives the person with Alzheimer’s something they look forward to going to. To be with other people that have the same problems themselves.

End of Life Care

My husband and I have our wishes on record on the computers here in Geelong and I feel comfortable knowing they are.

My daughter is high up in emergency in the hospital. From the staff point of view, if they know your wishes are on record they can make a hard time easier for staff and family. I would advise anyone here to have a medical advanced care plan.

I heard on TV- on the program about organ donation- that family can override any decisions.

Support for Carers

My husband was diagnosed with dementia. Through an advertisement in the paper I saw living with memory loss program. That is how I became involved with AA. We would go every week and the carers would learn from one another. That was the basis of my knowledge from learning from those people. I learnt more from that than I have from any literature or anything else. We were a family from the start and right to the end.

My husband had Alzheimer’s. I felt so alone. Through Alzheimer’s I get help, I am not so alone anymore.

It is important to have someone to talk to, listen to you, and not be judgemental.

It is very important for us as a group to get together, Memory Lane Cafés are important.

I am a carer for my mum. I recently tried to get carers allowance and I discovered that because my brother is there on the weekend and I only do 5 days, and don’t live with my mum I can’t get it. There should be better access to carer’s allowance.

How you are asset tested, is that going to stay the same? Given that you can’t get carers payments if you have too many assets.

We haven’t got any money left, it doesn’t seem fair. When p people go into aged care they are either paying a bond because of low care or paying accommodation fee and people find it difficult as there is no reassessment. It is means tested at the start but not in the interim. Clients are finding it is difficult to survive at home.

Acute Care

I was told to be quiet and behave myself. The hospital was aware I had dementia but I was only diagnosed a couple of weeks before hand. They treated me as though I was a child.

Ambulances – I had to call the ambulance for the first time in my life. When they arrived I had to draw their attention that I had dementia, they couldn’t wait for me to get someone to help so I told them to get lost and drove myself to the hospital. Top of page

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