Adelaide Consultation

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Table of contents

Appendix B – CALD consultations

Appendix C – GLBTI consultations

Appendix D – Aboriginal and Torres Strait Islander consultation

Appendix E – Regional consultations

Appendix F - Alternative models of hospital based care

25 October, Alzheimer’s Australia SA, Conyngham Street, Glenside, SA
Panel: The Hon. Minister Butler, Glenn Rees
Chair: Kathryn Cunningham
Number of attendees: 88

Main themes

Primary Care

Difficulty getting diagnosis

Information and Access

Too much information in the form of brochures
Difficulty navigating the system
Barriers between packages
Wait list for services and need for more funding
Use of brokers to decide on service

Community Care

Benefits of CDC

Residential Care

Lack of physical activity in care facilities leading to decline in physical function
Uncertainty about quality
Inappropriate use of antipsychotics

Respite

Lack of services for individuals with high care needs

Workforce

Student nurses having little interest in aged care
Importance of overseas workers

Support for Carers

Need for access to respite services for those requiring high care and for individuals with YOD
Importance of Support and counselling services for carers
Concerns about carers allowance
Need for superannuation component of carers payment
Concern about programs that lose funding

Research

Need for more investment in research

Special groups

Access to appropriate services for YOD
Side by Side Project as an example of service that is working well for YOD

Comments

Primary Care

I would like to see more information out there that can help us identify someone with dementia. It takes a long time and a lot of money to get help.

Information and Access

My dad was diagnosed with dementia at 60, and he has passed away. The whole system really sucked. We were handed a pack of forms and all these brochures, but you are in a state of mind that you don’t care. All you want to do is fill out forms and get on with it. Because I was a nurse I was supposed to have all the answers, I had no idea. It’s hard to know where to go for help. Where is the source you can go to, to access all the information? You are swimming in a world of brochures and all you want is answers.

In the current environment we are encourage to navigate the system, and I get so confused. When you arrive in at crises point there has to be an easier way.

My husband has dementia; it started in June 2008, when he was diagnosed with frontal temporal dementia. His language had become muddled, he could not string 3 words together, and he had severe frustration. After 12 months I was offered 51/2 hours from one service provider, and I thought this was great news as I was only getting 3 hours from another provider. Then I found out I could not get the 51/2 hours help because I already had a package.

We need to take away the stigma and demystify getting support; it’s not because you have failed it’s because you care. We have a 6 month waiting lists, how can we support carers so they can have a rest, if our services are so pushed. We could expand our services tomorrow if we had funding.

We would all agree that the human rights of people with dementia are being ignored. Access to aged care is a nightmare; each aged care facility has a different form from to the next one.

I concur about everything that has been said about complexity of system. I ended up paying $800 to someone to find me somewhere for my husband.Top of page

Community Care

My wife has younger onset dementia. She had behavioural issues and stayed a year in a facility that had appalling conditions. I then was able to get on a trial for a consumer directive care project. It has made a huge difference. It has taken off so well, one comment from a man in the group was “first there was button up boots, then we had sliced bread, and now there is CDC”.

Residential Care

My husband was tied to a chair in the nursing home most of the day. I complained and I was told he wanders into other peoples rooms. He got aggressive when four people changed his pad so he was subdued with a tranquiliser. He was treated like a dog. I couldn’t get anyone to listen to me, finally I found a broker and I found a nursing home. My husband can no longer walk, can no longer talk. He has been in the home for 2 years; he has deteriorated so rapidly, the nurses were not allowed to walk him because of work place safety for the nurses, so he was moved around with a shifter. The nurses learn to wash and clean someone but that’s where it ends. To converse with him or make life more pleasant for him, it doesn’t exist.

How do you know if a residential facility is good or bad? All I wanted to know was what facility was reputable and what is not. You put them in a facility and it’s the worst day of your life. When dad passed away I was left with overwhelming guilt as I was left with all the decisions.

My husband was turned into a zombie within a couple of weeks. He wandered into ladies rooms and was put on an antipsychotic. They increased the dose against my wishes. He has been put on four antipsychotics that should not have been put on together. He started falling. This is a serious concern because it has ended with my husband losing his mobility.

The lack of physiotherapy is unbelievable. I had a holiday and got the physio to come for twice a week for 3 weeks, so I paid $650. He is not allowed to be walked because the nurses might hurt their back. I do all the physio and I bring him home because I am not gain to leave him in that place, they leave them sitting in chairs for hours.

I think volunteers need to come in; there is an Italian man who has no one to talk to. There should be much more advertising for volunteers in aged care there is nobody and that is why I can’t have a day off.

My husband needs 24 hour care. We can’t say I am going to pop down to the shop to get a loaf of bread. I have a sick grandchild, I would like to go a visit her but I can’t do that. I visited another care facility, and I would not leave my dog there.

Two facilities we run have taken on a healthy ageing model. We focus on keeping people actively mobile until they die. The result has been amazing. Rehabilitation and recovery does not sit outside aged care.

Respite

Thank god for carer respite centre. They put us onto midway house; there should be one in every suburb. It gave me peace.

My husband was diagnosed 9 years ago at 55. It is horrendous trying to find respite for high care. (Service) is fantastic but that is low care. There are only 3 beds at ...; there are 17 people on that waiting list. These are all for four nights, I need more. So I am looking at residential care. It’s horrendous trying to find it. I did a seniors information scan on the internet and got listings for all the high care. Out of 140 there were 10 that had high care, pre booked respite. One facility told me because he can’t press the buzzer that he can’t go to that facility. I have been told by another facility he can’t go because he is under 65. Out of 10 there was one facility that was appropriate.

Workforce

I was in a class of 267 nurses at university; I was the only person who went into aged care. It was looked on as a terrible place. My training at uni did nothing to prepare me for aged care. We need to get the training right in universities. Older people go into hospitals and they are cared for poorly as their needs as an older person are not understood. When they act out the response from staff is restraint.

I am so grateful for people coming from overseas to work in aged care. It is up to us to train them better.

Support for Carers

It is important to have a support group for a carer, this needs to continue. The stress I have had has been extreme, and it is a long good bye.

I am 87, I am a relinquished carer. My wife died four years ago from dementia. Attending seminars and reading info does nothing to prepare you with dementia. I know. I travelled the journey with my wife. No one has developed a universal program as every person has different problems. The carer must be a path finder in the maze.

You can get an EACHD package that costs more than a carer’s allowance. I would like to see Centrelink payments going straight to the dementia care person.

I appreciate my carers allowance but it is .38 cents an hour. As carers we are on duty 24 hours a day.

I still work full time, my wife at 60 went into aged care. We have been married for 30 years, and due to funding we have had to separate.

Funding from dementia community grants are doing fantastic things but it does not continue. Where do the people go after 12 months to get ongoing social support and opportunities to contribute to society with their skills?

I am on board of carers support, most carers try their best but are heading toward poverty. It is not fair for someone on carer’s payment to earn the same as someone on the dole. They need respite and need to look after themselves and their own future. They need to have a superannuation component, who is going to look after then when they get older, all has been spent and no money for them.

Research

We have come so far with breast cancer research because of all the funding. We all know the stats of dementia and there is no cure. We need more money for research

Special Groups

Younger Onset Dementia

There is this artificial differentiation between aged care and care for the rest of us. So why not have disability assessment teams. Why the differentiation and why are we left out.

I have recently started working with YOD, outcomes for side by side project are spectacular.Top of page

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