Consumer Engagement in the Aged Care Reform Process

Melbourne Consultation

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27 October, Alzheimer’s Australia Vic, Riversdale Road, Hawthorn
Panel: The Hon. Mark Butler, Glenn Rees
Chair: Maree McCabe
Number of attendees: 70

Main themes

Primary Care

• Difficulty getting a diagnosis
• Lack of assistance once diagnosis is received
• Family member being required to speak about problems in front of person with dementia

Information and Access

• Wait time for assessment
• CAPs level packages not appropriate for individuals with dementia

Community Care

• Admin cost taking up 50% of package
• Benefits of CDC

Residential Care

• Chemical and Physical Restraints
• Costs

Respite

• Need for more and higher quality respite services
• Need for high care places
• Difficulty getting enough respite to maintain employment

Workforce

• Staff training
• Staff Levels

End of Life Care

• Inadequate access to palliative care

Support for Carers

• Need to look after physical and mental health of carer
• Training for Carers
• Need for more information on managing behaviours
• Possibility of an insurance scheme to pay for care

Research

• Need for investment

Acute Care

• Poor quality care
• Lack of staff training
• Lack of interest in providing treatment to individuals with dementia

Special groups

• Financial difficulties for YOD
• Use of medication to control symptoms
• Need for YOD specific services that address the different needs of individuals with YOD.

Comments

Primary Care

My biggest issue is struggling with diagnosis. The doctors don’t want to know you. When you finally get a diagnosis, you are put on the back burner. So I had to find a private person.

My husband now has Lewy body dementia. It took the doctor so long to give us a diagnosis. I had to explain everything to the doctors in front of my husband which was so hard, before he would send me to the geriatrician. She was wonderful. She would call me the night before an appointment so I could tell her what was going on and not have to say it in front of my husband. The GPs need better education and to just send you to a geriatrician.

We had to wait till we had catastrophic behaviour until we got a diagnosis.

Information and Access

I live in rural Vic, I chair a carers group. We have a lot of people trying to access the system. There is a long waiting time for ACAT. Once you have it there is a waiting list for EACHD even if you are classed as high care.

I am a case manager. From what I have observed, if one people are diagnosed with dementia they should automatically qualify for an EACHD package. Not go on an assessment of a CAPs package. This would decrease carers stress.

Community Care

I have been 6 months into the pilot of the consumer directed package. These gave greater transparency, and I am very positive about those.

My father has dementia for last 16 years, Community aged care packages. I can’t get my head around the admin fees who take 50% of the package. It equates to about $250 a week, so he is getting half of what the package is worth. I don’t see how this is justified. We are struggling. He is at a very advanced stage. We keep getting told there is nothing left there for you. A package is worth $50, 000 but we get half than that is not sufficient.

Residential Care

There is willingness to sedate people with Alzheimer’s. There is a link to antipsychotic drugs leading to other illnesses. The nursing home wanted her to be manageable, and sedated her. I believe the longer the resident is in their own home the better. The bullying – there is no other word I can use. The bullying we have come across in nursing homes, from hospitals and doctors.

My mother had to go into a nursing home. She was a wanderer. There aren’t enough dementia specific nursing homes. She spent the last 15 months of her life wandering up and down saying I want to go home. In a dementia specific nursing home they can go in to the garden.

We are fortunate that my dad did well and my mum is in a private aged care facility. We have had to sell the home. The costs are huge. When returned to aged care, in high care, we were told by the medical professionals that we would need to employ a private nurse for $100 a day and $200 a night for extra care. Now we pay for extra physio. If you don’t have families that are there for you what happens to those people. I would like to see doctors practice, dentists, chemists, physios and practitioners interested, to give them a better quality of life.

I have an ethnic aged mother. I have ongoing issues with nursing home about her being ethnic. It took a year for the nursing to get it right.

My father went into a nursing home. He has always liked going for walks except now it is called wandering. Twice he walked out of the nursing home. It was a serious crime. So they whacked medications into him and he was like a zombie. Then I went in and he was trapped in a wheel chair. Top of page

Respite

There here isn’t enough respite centres that have available rooms for us to send our loved ones too. I haven’t put my husband in respite because my heart won’t let me. We need to have good care in places that are more available.

I have taken care of my husband for 10 years. I have been receiving respite once every 3 months. I would like to know if it is possible to have it more often. After 3 months I am really dragging. During the respite we are taken away on trips for rejuvenation. I am blessed by Susie Nemo, the day she came to the door I asked for an angel and I really got one.

There is inadequate funding for carer respite. My husband is 46, and we have a 2 year old son. He needs extra medical help. The cost of everyday living means we are falling behind. I have had to find more employment, but I was told as a carer I was only allowed to be away from my husband for 25 hours a week. He has feeding problems and aggression. There is no hands-on support in the home. To find a respite facility to suit is very hard. My friend in Melbourne put her husband in respite to take her children away. He ran away from the nursing home because he was physically fit at 44 to build a ladder and escape. Where is the respite for these young fit people?

I suggest there is insufficient support for sufficient and supportive respite care. The outside activities that the person with dementia can do is great, tea parties. They look forward to it and they come home happy and tired. Then the carer and sufferer has a break that works but it has to be more often.

Workforce

There is a lack of training for dementia specific staff. From carers to nurses to people who run these places. I have had to sit there and explain to the staff. The lack of training includes all the staff.

The other thing is the staff ratio is appalling. I am constantly battling. My mother was locked in the toilet for 4 hours. No one cared to know where she was. I feel for the others that have no one to come in and look after them.

When they went into a nursing home there was no training in dementia, and now they are and they are using Alzheimer’s Australia for training, people in that home are now more aware of what they can do.

End of Life Care

I’ve been told that if my mother does not die fast enough in a palliative care setting she will be sent away. I am fighting for my mother to die in a palliative facility because I am told she is not worthy.

Many people don’t want to go into institutional care. I applaud the report that wants to keep people out of institutional care. I think people who are faced with institutional care, means that it is their time to die. A properly conducted sociological survey finding out the wishes of these people in an open minded way should be carried out.

Support for Carers

The government should have a strong interest in the health of a carer. I had to reconstruct my professional life and look after my own health. Those who are carers have already suffered, to be means tested is a double whammy.

I am a past carer. Insecurity, boredom, depression and insomnia. These four issues are interrelated. There should be training for the carers as soon as the person has a diagnosis. Instead of walking out of the doctor with a script and saying what the hell do I do now, we should be given a sheet about a training session. The opportunities are there with the gateway system, and AA has courses, but people would be kept out of nursing by better support for the carer. we don’t know how to deal with sun downer.

I was guided to AA and to all the workshops that were available. As I go through the journey with my husband I am finding things that I didn’t learn from AA. I am struggling with sundowners at 2.30pm or 3.00pm. I didn’t even know it existed.

I have found that I have had to do the work that should have been provided to me. I have had to close my business to take care of him at home. I did it for 5 years until I got really sick. We are missing the knowledge about how to manage the behaviours of people with dementia. We need a system of carer coaches. Counselling services from Carer Vic has been particularly helpful.

I asked if what I had to pay for care had anything to do with the value of my house. If you have a good pension it is one thing. I saw a very nice place; it costs $400,000 per room. For two of us it’s close to a million. Then it is an insurance problem. So how do we get a fund to fund the nursing home? Simple. Superannuation. Take nibble of the trillions in superannuation fund that can only be used for the unlucky 6% to go into a nursing home.

Research

Both of my parents have dementia. I would like to ask is can we get more money for research. Everything comes down to research. I have been to many info nights, I thought I understood dementia as a carer, I don’t understand. I went into the wrong meeting, it was a meeting for a medical staff. I learnt more in there than in 5 years.

We need dementia research on the model of the courageous brilliant doctor in WA who hypothesized that ulcers were caused by infection and went on to win a Nobel Prize.

Acute Care

I have just had someone in hospital and the staff were not trained on how to deal and work with a person with dementia.

My husband walked into an emergency ward. He was not allowed to feed himself. After 5 weeks he was condemned to a nursing home. 5 days after he walked and 6 weeks later he came home with no more community aid than he had before.

I am the daughter of someone who has Alzheimer’s, my mother is currently dying. There needs to be a change of attitude, every time my mother enters a hospital they ask what is her quality of life? If I didn’t give an answer to please them they wouldn’t be interested in treating my mother. The health care system – if you have Alzheimer’s you are the lowest priority.

There is no staff training in hospitals. If I didn’t go in to feed him he wouldn’t have been fed for two weeks.

If there is one thing that can change, is not the education of the carers but for the doctor especially in hospitals. The doctor at the hospitals asked my mother which hip is broken. My mother would have no idea what hip it was
There is also the stigma, my mother walks around with a teddy bear. That is her security.

I took my mum to see a professor at the hospital. A hospital staff was in the elevator with us and said what the hell is she doing with a teddy bear. Where is the dignity and respect for elderly people?

Special Groups

Younger Onset Dementia

We need people who can visit the home. And some coaching and mentoring for doctors and nursing homes. My husband has different needs to everyone else, and he is the youngest in the home he is in.

I am 45 years old, I have 2 teenage children that my wife and I are trying to bring up on the pension alone. The pension doesn’t vary between someone who is in a nursing home and someone my age. That makes it hard trying to bring up kids and pay a mortgage. There needs to be more awareness of YOD as it is increasing. There has been mention made of medications. The more they get put on the more dopy they become. . You don’t want to get to a stage you are put on so much medication that you can’t get out of the bed in the morning. Aged care facilities – there needs to be more emphasis put on places for younger people.

YOD, in terms of respite care and residential support, we have been trying to work and come up with a model that works for younger people. In England we saw a great service. It was specifically dedicated to YOD. I want to know if we could have it here, we have one in NSW, which is Hammond Care. But there is nothing here.Top of page

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