Consumer Engagement in the Aged Care Reform Process

Mandurah Consultation

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4 November, Offshore Fishing and Sailing Club, Mandurah, WA
Ellen Skladzien and Frank Schaper
Number of attendees: 22

Main Themes:

Primary Care

• GPs need more information or training
• GPs lose interest after diagnosis
• Doctors not willing to visit nursing homes or do at home visits

Community Awareness

• Need to Raise Awareness
• Stigma

Information and Access

• Lack of centralised information
• Waiting list for services
• Need for a key worker
• Desire for verbal information instead of brochures
• Waiting Time for ACATs

Respite

• 6 week wait for respite care
• Staff not listening to advice from family regarding behaviours

Workforce

• Inexperienced, unsupervised staff
• Staffing levels and wages are inadequate

Research

• Need for more research
• Desire for feedback after participation in research trials

Acute Care

• Hospital staff unable to handle dementia symptoms and calling family at all hours to provide care- even showering Top of page

Consumer comments:

Primary Care

Information needs to be given to the GPs. The first GP I went to said ‘what do you expect at his age’?

The doctor does not want to see my husband any more, he is just floating.

When I got my husband diagnosed I was told it was just old age. When they called Fremantle hospital they didn’t want to see him again.

My husband is suffering with Alzheimer’s. I would like a doctor to come to the house, to have his check up, so he doesn’t have to leave the house.

There was not one doctor that would go to the home so I had to change doctors to visit him. I am told the doctor will have to cut down on the homes he will visit. There does not seem to be the availability of doctors to give this service.

You need to shop around for doctors. You have to think long term. You don’t want to have to change doctors, make sure you ask at the surgery if there is a doctor that is prepared to visit the nursing home and do home visits, there are some.

By accident we had a medical problem, and the nurse asked what was going on. We are now on an aged care assessment waiting list.

Community Awareness

When you think of the amount of publicity for breast cancer, depression, men’s diseases, you don’t get the same awareness for Alzheimer’s. The whole out look of society needs to change. Its not happening with Alzheimer’s like it is with other.

Your friends drop you; people don’t know how to handle it in a social situation. People don’t talk to him they talk to me. We need to change the community’s reaction toward it.

Alzheimer’s has to be a more popular topic to talk about. Most people do think it is just an old person’s disease, but its not. We need to make sure people have respect for those people. We lost a lot of friends, they think its catching. We need a voice out there for more money.

Information and Access

We came here, it was such a maze and we felt swamped. I wrote to the doctor, and didn’t hear anything.

I am concerned about having choice; we should be given a list of places that we could go to.

We have nothing that can give us step by step of where we might go. No list of possibilities that can be given to us. We would like a person we can talk to individually, about what is troubling us.

Through everyone being helpful and kind things are beginning to move. I have addresses galore and places to contact. There is no central set of information like a childcare centre that you can go. People get all sorts of problems and all the services are split up.

Other illnesses such as diabetes have a full time nurse available who is responsible for particular individuals. They provide help with the next step, where to go and how to achieve what you are looking for. At the moment we don’t know what we are looking for as we don’t know what is available.

A big brochure came in the post yesterday and now I have more to read and work out. I just want someone to tell me what needs to be done.

I have learnt more about Alzheimer’s from reading, such as those about Hazel Hawke. You have to move into their world as they cant move into ours. It makes life a lot easier when you understand how Alzheimer’s is affecting them.

I have organised the end time, but the in-between what do you do because the nursing homes can’t look after them then. Top of page

Respite

Carers cope with a hell of a lot. There is very little consideration. How do you get respite when it I not available until six weeks down the track.

It wasn’t until he went in for respite that things need to be changed. They complained that my husband walked around all night but he was looking for the toilet, but there was no sign on it. I took a little light and fixed it so it would shine it the door and explained that was where the toilet was. Until one night they didn’t turn the light on and he went into the lounge room and thought it was the toilet.

Workforce

I have had experience with different carers coming to the house who were not even trained. For example, a young girl about 16, trying to do a good job came to the house but she was not even supervised. But what could happen if I went out. There is not enough money given to the care staff for them to be trained.

I have a dream where there were special carers, so the families would know the person. It would be that person that could come for a weekend and let you have time off, a bit like a social worker.

The Nursing homes my husband is in has only 2 staff for 16 patients. How can they attend to them all? They have to go around and give medication and help to toilet people. No one is attending if someone has a fall or needs to eat. It should be 3 staff for each person not 8 to 1.

Staffing is a main concern in all nursing homes. I know one place has 1 staff member to 11 people with dementia but that might be over the weekends. It’s not enough.

There are a lot of people out there with empathy and care, but if they can’t get paid for it they don’t want the job. It all comes back to finances and wages.

There is not enough money to employ the staff that are needed. In the 90s when I was working I would be the only carer for 10 dementia people for 6 hours, and I was given a 10 min coffee break. We need to move on from that.

Research

I would like to know what research is being put into the Alzheimer’s. I want to know what type of dementia my husband had, if it was gene related and if it could happen in the future. You wonder where it will end up and there is no answer.

My husband did research for 9 months at the hospital. He got fed up after 9 months as he didn’t want another MRI. I never got any feed back in those 9 months as to what came out of it. As he was having all sorts of things like blood tests and MRIs.

Acute Care

My husband went to hospital; he is advanced with Alzheimer’s. I get phone calls at 2am in the morning from the hospital to sit with him to make sure he is not running around. They need a nurse that knows what Alzheimer’s is about. He falls, next thing I get a phone call to come over.

I had my husband in hospital and they expected me to look after him during the time he was there. I went home that evening and they had transferred him to another hospital and he had not rung me. They need to have someone in the room at all times with the person who has dementia.

A friend whose husband has Alzheimer’s was in hospital and was running amuck. It was by gods grace they rang the daughter and not the wife. She was getting blasted on the telephone. His wife had to go in to the hospital for 10 days to sleep in a recliner, and do the showering. She had no time to herself.

My husband was in a private hospital, and they were still waiting for me to wash him. That is disgusting, as soon as they see Alzheimer’s, that’s it, it frightens everybody.

My husband was in and out of hospital. Every time he had a catheter put in he had an infection and I would have to nurse him. It is so distressing. Top of page

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