Consumer Engagement in the Aged Care Reform Process
Brisbane Consultation
Table of contents
- Abbreviations
- Executive Summary
- Introduction
- General
- Special Groups Consultations
- Conslusion
Appendix A - General consultations
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
20 October, Chermside Kedron Community Church, Chermside
Panel: The Hon Mark Butler, Glenn Rees, Athena Ermides (General Manager, Berlasco Court Caring Centre)
Chair: Victoria Beedle (CEO Alzheimer’s Australia QLD)
Attendees: 71
Main themes
Primary Care
- Length of time till diagnosis
- Inaccurate diagnosis
- Need for more awareness
- Not listening to carer
Information and Access
- The need for more geriatricians in regional areas
- Lack of services available for those with severe BPSD
- Lack of appropriate services for YOD
- Inconsistency across what types of services can be included in a community care package (bathroom cleaning but not dusting)
Community Care
- Lack of consistency in staff
Residential Care
- Use of physical and chemical restraint
Respite
- Not able to access enough hours of care
- Need for respite services that can respond appropriately to BPSD or other high care needs
Workforce
- Staffing levels
- Training
Support for Carers
- Access to information and support services
- Need for better financial support
- Individuals separating in order to be eligible for carer payment
- Training and education for carers
Research
- Need for more government funding for dementia researchTop of page
Quotes from Regional Queenslanders
Primary Care
My husband has a short stint of dementia, short because I couldn’t get anyone to diagnose my husband,I have YOD Alzheimer’s. It took 18 months to get a diagnosis in Townsville even though we had genetic evidence this would happen to me. I have two children with autism and I can’t get any help, no one understands.
My husband was treated with Parkinson’s disease instead of dementia.
YOD, showed signs in 40s and 50, she didn’t get a diagnosis until she was 60. Awareness around dementia as a whole, issues around elderly and the younger generation suffering. If we had awareness around all the forms of dementia, the community would be aware; it would help to get a diagnosis. There is so much awareness and support around a diagnosis for cancer; but not for dementia.
GP was some support, but I was sent to the wrong person because he could not see anything wrong with my husband.
I took my mother to the GP, and he didn’t seem concerned. There was no suggestion to refer her elsewhere. A big problem in regional areas is we go to GPs for help. Unless they have had personal experience with dementia they take no notice of the carer and their concerns. There is a lack of medical professionals we have access to in regional QLD.
Information and Access
Only 2 or 3 geriatricians in QLD, I had to travel 620kms from Rockhampton to the Sunshine coast. It would be beneficial to us to have a visiting geriatrician.We need a permanent geriatrician; the fly in fly out is not suitable.
We need to get emergency help.
People here don’t know if they like white or black tea but the doctor will still give them a driving licence.
Residential – great for ageing but don’t cater for younger people. This should change with the higher numbers we will see by 2050
Reluctance of ACAT staff to provide EACH package
Community care
CALD: Helping people stay at home as long as possible is fantastic, but in Townsville there is not enough HACC. We need more resources put to that.The longer you keep people at home means that when they enter full time care they have much more significant high care needs.
Food: They have sandwiches, this is culturally inappropriate. I am then provided with a bowel of rice and a sandwich.
Respite care
I put my husband in care and had to pick him up again because they couldn’t handle him. We need more short term accommodation.Day respite is a waste of time.
There is no respite for younger people with dementia. Respite couldn’t handle her being so active, she needed a secure environment. There are not enough carers, so she was sent home from respite. You feel social exclusion every day, from employment, education, Xmas, birthdays. We can’t do it because we don’t have assistance provided for someone with such high care.
Carer support
Funding for the carerNot enough accurate information
Coming to Alzheimer’s group was a help. I came to ‘living with memory loss’ and was able to get a referral to a geriatrician.
We need more care and services in the home.Top of page
Comments
Primary Care
My husband has YOD. He wasn’t well, he was feeling tired and retired at 60 and we set out on travel. In London I did the administration for Brent memory clinic. The psychiatrics did it there, so it saddens me when I hear people say the psychiatrics can’t do it (memory assessments), we needs a geriatrician. It horrifies me about the diagnosis difficulties, 3 1/2 years, when the GP really needs to just to an examination and send it to a specialist. An assistant psychologist can do the testing and you pay them nest to nothing because they are dying to get the experience. Then you have an accurate diagnosis. I got 3 1/2 hours of cognitive testing. This was wonderful and priceless to have this at the YOD stage. I have copies of all the testing, all the reports and all the blood tests. That has never happened to me here.Information and Access
My husband is about to turn 70, he has had dementia for a number of years. His issues are mainly mental health. He has been diagnosed as psychotic. He had to go into residential care. Day care is not suitable as he tried to strangle staff. His problem is he believes he is in jail. It took a long time for me to find someone who is willing to take responsibility for him. The dementia unit would not take responsibility. The mental health people would not take responsibility. The suitability of the aged care is fantastic, but it costs me dearly. If it wasn’t for the wonderful staff that let him wash and clean and post letters, he would not have anything to do and he would go backwards. The staff are not trained. So my issue is who takes responsibility for mental health dementia sufferers.I would like to see changes to building codes so with an ageing population people can stay at home. Like wider toilets, wider hall ways. Once someone can’t get into the shower they can’t live at home any more.
There is a patchwork in the inconsistency of services. You can’t make an appointment. You wait 45 mins to be seen. It’s so simple to buy a house, compared to the other stuff I was confronted with. I have a HACC cleaner, and I can only get a basic service. They clean the bath room and can’t wipe the window sill, that’s dusting.
Many ACAT teams are reluctant to give out EACHD packages. We went through three providers before we got what we needed.
My husband is 74, he was misdiagnosed with Parkinson’s, and finally diagnosed with Lewy body dementia. On the EACH program I get 12 hours a week. The other 150 hours I do myself. What will happen under the consumer directed care; will it give me any more hands on help per week? What happens when the yearly allocation runs out?
Will there be a review of the age care criteria for funding? I struggle if they are under 65. We are younger and younger with dementia and other health issues.
Community Care
Different staff came in each day. I heard screams coming from passage, the strange women came in to rip shirt off my father, she said ‘I have 20 mins to do shower and I have to go’. This is not good enough. People with dementia need time.Residential Care
The whole of society needs to be made aware, what have we got that allows people living with dementia to live their lives? In another life I inspected nursing homes that is why I chose to keep my father at home. There are many that make the minimum standards. I have seen people time and again drugged up ad tied up. Some dementia units will put the least experienced person in to care.Respite
My wife goes to Mater respite two days a week, and that is wonderful.I get 1 hour respite Monday to Friday so I can take my daughter to school. It is not enough.
Carer support
I care for my mum. I am 46 she is 76. Over night I was living in my home and then I had to move out to care for my mum full time. I would like to praise our health professionals and feel sorry for those in regional Australia. I have had to leave my husband and family at home. I called Centrelink to get a carers pension. They advised I am not eligible, as it is means tested. To get it I have to leave my husband. I live on $50 carer’s pension. This needs to change very quickly.I put my hand up, train me to I can transition with my mother. I would like to be trained in first aid and how to shower her. So when she goes into high care I can still help her. Please train me and financially support me.
There is a lack of information for me out there to care for my husband with dementia. Will there be more funding, for carers like myself, who want to do more? I devised my own program as there wasn’t anything out there to suit him. Is there educational programs out there to help us? There could be programs out there to help new carers to keep them at home longer. We also need the help ourselves financially.
If my dad didn’t have dementia he would be horrified that I have seen him naked and have showered and wiped him.
Workforce
The home where mum is in is fantastic, it’s always clean and the staff bend over backwards. However they are understaffed, particularly in the dementia ward. The patients don’t have the ability to say ‘’I need to go to toilet’'. There are 2 staff between 20 patients. Mum also has cancer, but I am praying that mum’s cancer will speed up. I would rather die with a heart attack than live the journey with dementia. Mum was only allocated 3 nappies per day. When I questioned it, the staff said that your mum goes to the toilet too much. I kicked and screamed, and got it fixed but what about the other people. If that was a child we would take them off their parent. Mum can’t tell them she is dirty, we visit and we smell it.I have been the carer of dad for 14 years at my home. It was a long journey. He showed signs of dementia in 50s, when mum passed away she said we need to look after him as he was not all that he appeared to be. He is the eldest of 10 and 7 of his siblings have passed away having dementia. We need to see dementia as a specialised area. Our carers receive basic training; cert 3 and 4 does not adequately prepare them.
There is a desperate need for education in allied health professionals. My father lost his denture plate and the dentist said if he has dementia the only way we can deal with him is give him a general anaesthetic. The police need extensive education. They told us we were neglecting him and we need to put him in residential care. I saw the security guards pull people with dementia aside and tell them to take off their buckles and shoes. People with dementia don’t understand they have shoes setting off alarms.
Research
I am as mad as hell. I have been caring for my wife who was diagnosed at 63. She has had every bit of medical attention we can get her. She participated in a drug evaluation at the UQ memory clinic. The results proved it was not a cure. We went to china, where she had 4 weeks treatment with stem cells, but it hasn’t helped. I spent yesterday trying to find out about the 60 minutes report. I then found out that the trials at Griffith University have been put back again. I assume it’s because they are having trouble raising the $100,000 to do it. How much money is the present government spending on Alzheimer’s research? The ageing section is the bandaid section. I would call you the minister for bandaids. If you were to spend a billion dollars on research we might get somewhere. We can spend a billion dollars on schools and pink bats…I am a carer for my husband with Alzheimer’s. I spent the previous 40 years as a medical researcher. I would like to emphasise that we need a massive amount of money for research. Cooperative research centres for Alzheimer’s.
We need to be proactive, research is key, we need to find a cure and sell it to the rest of the world.