Consumer Engagement in the Aged Care Reform Process
Sydney 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
19 October, Alzheimer’s Australia NSW, North Ryde
Panel: Glenn Rees, John Watkins
Chair: John Watkins
Number of attendees: 22
Main Themes
Primary care
- Length of time between symptoms and diagnosis
- Role of family in getting the diagnosis and concerns about responsibility.
Information and Access
ACAT team not listening to family- Assessment not being accurate
- Cognitive impairment considered not sufficient to get access to care
- Wait list for services
- Stigma resulting in people not seeking services
- Barriers between services
- Information referral pathways.
Community care
- Inequities across locations
- Staffing
- Flexibility
Respite
- Need for more flexible respite with longer hours
- Staffing consistency
End of Life Care
- Staff not respecting wishes of individuals and their families
- Difficulties with family disputes and guardianship tribunals
- Power of attorney
Support for carers
- Health impacts of caring role
- Need for counselling and support
Special Groups
- Needs of individuals with intellectual disabilities
- Lack of appropriate services especially for those with BPSD Top of page
Comments
Primary Care
My mother has frontal temporal lobo dementia. As it is not Alzheimer’s and not as common it was difficult to receive diagnosis. She was 67 and young and living alone. From a distance, we tried to help her to get a diagnosis when we were observing some odd things happening, and she was unaware, it was difficult to get access to medical help. She had a good GP but she couldn’t express these things. I tried to tell the GP. He said something was wrong. She was sent to a neurologist who said there wasn’t much of a problem. People say she is ok, getting older, a bit of memory loss, tired and depressed. Annually for three years mum was sent to neurologist. He said she didn’t try hard enough on the tests. She was doing her best but wasn’t able to advocate for herself. I wasn’t her guardian so we were trapped. The following year the neurologist said something was wrong and left us at that. Finally we got to the point when I had to be so forceful to say this is not ok. Finally we were put in touch with a geriatrician and we got a diagnosis. Positive – the geriatrician was very helpful, he specialised in difficult cases.Part of the answer is early diagnosis, when the person has capacity to make directives for the family. They can make decisions for their own life.
My mother called and said something is wrong I need help. I called the GP. She talked about the problems with her memory. The GP referred us to get a brain scan. I was asked to fill out a form saying how did mum change. And I felt I can’t be responsible for her because classified as dementia if I filed in form. I called my sister so that we could do it together. The doctor was fantastic. The doctor said you know you have Alzheimer’s and you know it is fatal. Mum was ok with that.
Information and Access
To have an ACAT assessment – the approach is they ring my mother’s home to make an appointment. But she was saying no thank you; she didn’t know who they were. She thought they were people trying to sell her things. (As a result) ACAT were closing her file, not responding to the GP or geriatrician. Then I would contact them, put her on the list and it all happened again. Because of privacy they couldn’t deal with me, they could only deal with the patient.When mum moved into care, the assessment they did for her, they asked her who Charlie Chapman etc is, she knew all that. But she passed the test and they told us she wasn’t sick enough to come. I had to go back to the geriatrician and the GP who wrote a letter to provide proof. They accepted her. Dementia was not a good enough reason. She had to have at least $50 worth of medical expenses to be eligible for care. She had to be physically unwell.
People don’t come onto the programs because of social stigma. There needs to be community awareness of YOD. We need buddies to walk the person with dementia through the life process.
The main problems were trying to get the package. The lady rang to say she was coming, and didn’t explain who she was. So I cancelled her, this meant they took her off the ACAT assessment waiting list.
I have no idea or experiences what services are available. We were told by ACAT to get a HACC package and that was fantastic. But by that time she was so far along she was beyond these things. I tried to get access to information about services by the web and DoHA, which was like wading through mud. Another difficulty was dealing with Centrelink. Things were so compartmentalised. Then they would tell me I would have to go back to DoHA, but I couldn’t access them physically, couldn’t find what I needed on their website. At this point you are so over tired, over burdened, over stretched and over worried that everything is so much harder.
Gateway – there is not an obvious central point to find out things at the point of diagnosis. I needed a phone number – AA is a central point of call, helpful because it is non government. It is helpful to have a central place to get information.
I stumbled upon a publication that had a list of all the places in one place. Lists by geographical area that was very helpful but took me a long time to get hold of it. If I had known more about AA it would have helped. I appreciate AA advertising, once I found out about central phone number (dementia helpline) to call that was a significant move forward. Finding a low care dementia specific place was very difficult. My mum has since come into one and it was terrific.
Mum needed more help, we got a reassessment of the ACAT, (and they found that) she needed more help, but she couldn’t get it if she lived at home by herself because she had to be assessed as needing to go into a nursing home. So the only thing we could do was get community help from lifeline. They took her once a week. But I couldn’t access any more care even though they clearly acknowledged she needed more care in the home.
Community Care
You need people to come and do community care, where do you find them, how do you pay for them?Need more flexibility in community care.
There is inequity of service delivery across different locations.
Respite
I know there is problems with funding but money could be better spent. My husband goes to a dementia unit one day a week, it half hour from home, 10-3.30. So it doesn’t allow me to work those days so it’s not such a great help. I feel that I could be more use to the community if they could make the hours longer and provide transport. I joined one of your support groups, it is helpful but it makes me gag if people think it is the be all and end all. I would rather emphasis put on the community so they can help. On a recent holiday my husband was delusional. I have the opportunity to go away with my daughter and I can’t go as I can’t get my husband into respite. Emphasis on community care would enable me to work longer and keep my husband at home longer.There is lots of waste. I have a friend in charge of a day centre for dementia. These people are supposed to have a carer there, but a lot of the time the carers are not around, sitting in the care, not doing what they are paid to do. There is a hell of a lot of waste in the administration of a nursing home. Admin staff would have a company car and go off for lunch and the nurses had a huge amount of accountability, but I had very undertrained staff coming in from 476 visas from china, they were terrified, couldn’t speak English. All this money and payment of people – there is a lot of inequity and waste.
There is not a lot of consistency in services. No point getting different workers to come in and shower a person. The time the carer should be spent having respite is spent instructing the new worker. It is hard for the carers to have faith in the services they are entitled to. Top of page
End of Life Care
My mother passed away last year. We looked after her at home. After entering the home it was extremely undignifying. She couldn’t swallow, lost weight, under 40kg, lost her sight. I am still feeling that I left my mother down. She used to say you will know what to do…presumably sleeping tablets. The cause of her death is dementia and genetic. I have requested palliative care. I don’t want my grandchildren to see me curled up with contractions. I wake up at night thinking about it. My mother’s wishes were not taken note of. I had to plea that mum would not be taken to hospital in ambulance. They were giving her antibiotics to keep this poor lady alive.My mother is in a nursing home, I suffer confusion and grief about our experience. My mum passionately wanted to stay at home. She had short term memory loss. The GP put us in touch with an assessment team and geriatrician. She was diagnosed with Alzheimer’s. I am also a RN, so I knew how to put things in place around the home, putting notes around the place and respected her. I tried to convey this to my sister and brother who didn’t understand her needs. I thought I was managing things for the family but it got to the point my brother and sister said the only place mum should be is in care. It was a huge shock. They changed the power of attorney and lots of awful stuff. So I had a lot of grief. She then had a fall and was not able to go back home. This caused more arguments with family. The guardian now is in charge of her and I find that very distressing as the guardian isn’t that interested in her. I have accessed AA for some counselling. But I wish I had more access and understanding, so that our family could be brought together to talk about mum’s needs. The care is institutionalised; it is so distressing for her. She has put on 22kgs of weight because of the antipsychotics. It is a slow terrible grief declining to nothing.
I wish there was more credit given to the person who has been the main carer. There should be different ways (to handle disputes) rather than going through the guardian tribunal. My family was trying to discredit me and all my history of nursing.
Wife’s mother has Alzheimer’s, for me it is déjà vu, over 2 years ago my first wife died of cancer. At the time we were looking after her mother who had dementia. We got a lot of flack form family as we had to start to think of mum going to another place, there were considerable problems at home. She could have easily crossed the main road and killed herself. Her doctor wasn’t completely convinced as she always presented well until she was put into respite care. The doctor who was called out every night decided she needed to go into care. At this stage my wife who was power of attorney, but had cancer. Her disease was terminal. As a result when my wife dies, before her mother, I was getting bills from hospital, I took them to the bank but had no authority. No one told me any different until I made further inquiries. I had to pay bills out of my own money which was running out. Someone said to go to social security, and I got her pension transferred and became her guardian. It was not well known you could do this. Once a person is deceased, immediately some government body should be in contact with family to advise what they should do.
Support for Carers
The attitude is that the carers should look after people, but this leads to an early grave. My sister has been so caring that she had made her unable to walk without of assistance because she was in bed all the time. There is only one little bit of brain knocked out and we should work around it. There is space for a different sort of carer – not just palliative care – but someone who actively activates a person with Alzheimer’s. If I had made her do more things with supervision she could have maintained her abilities. It would have been an opportunity to try and keep her out of a nursing home. One category of carers does not cover everything.I am a YOD coordinator from central coast. I provide a social support service for YOD. A lot of people when told initially deal a lot with grief and denial. This prevents them coming onto the program. The carers say I am young and strong enough which leas to problems later on. I would like to see the buddy seeing the people through by working with their abilities.
Then you come to the carer, the older generation are proud and they want to keep their dignity and don’t want to receive help. The younger generation know what their entitlements are and ask.
More credit needs to be given to the long term carer. They know more about the person than anybody else.
My mother had dementia before she passed away. I was stressed and depressed and went to grief counselling. 3 years later I was depressed and upset and it cost me my marriage.
I have been a carer for 14 years. My husband died and six months later my daughter was diagnosed with an illness. The most important thing for a person is medication. Taking it when they should have it and also love, faith, hope and care and a lot of support and patience. Because they do flare up. Because what is the sense of trying to pacify them, as you can make them worse. Listening to the speakers here today has been a great eye opener to me.
Special Groups
Intellectual Disabilities
Initially you talked about aged people, YOD and psychiatric, there is also a growing group of people with dementia – those with downs syndrome. I have a sister with Down syndrome and dementia. The problems with getting ACAT are enormous – they refused her, and so did the nursing homes, they don’t take disabled people. These people fall between the gaps.Couldn’t get assessment for my sister with Down syndrome until she had an accident and I stood up in hospital and said I can’t take her home. We were told (by the hospital) to get her out of here we need the bed. I was given a few names. The first thing the induction person said ‘well of course she can’t afford to come her’ then she said ‘she is younger she will be dangerous’. The hospital and the specialist at the hospital were rude and told us we were over protective. We finally found a place where she was accepted. She was on a list for a group home; the emergency list for a group home is 18 months – 2 years. By the time she got there she was not accepted.