Consumer Engagement in the Aged Care Reform Process

Consumer summit – National Consultation

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13 October, Main Committee Room, Parliament House.
Panel: Glenn Rees, Sue Pieters-Hawke, Professor Brodaty and Paul Gregerson
Chair: Ita Buttrose
Attendees: approx 200 consumers

Main themes

Primary Care

• Difficulty getting a diagnosis
• Questions about cognitive screening

Community Awareness

• Need for a holistic approach to brain health

Community Care

• Need for consistent staffing
• Preference for flexible consumer directed care

Residential Care

• Care recipients health declining suddenly after entering residential care
• Rights of the person with dementia and implications of locked wards

Respite

• Family member not being allowed to stay with the person during respite care.

Workforce

• Staff levels
• Training

Special Groups

• Lack of appropriate services and support for younger onset dementia
• Need for different models of respite and residential care

Support for Carers

• Carer pension not adequate and means tested
• Difficulty getting home modifications which could assist carer in keeping person with dementia at home.

Research

• Need for more research fundingTop of page

Comments

Primary Care

My three main concerns are diagnosis, diagnosis, diagnosis...convincing GPs to diagnose and families to get it.

I wonder if government would provide funding for assessments, early screening.

My mum has been diagnosed for four years. But, there was something wrong ten years before that.

Henry mentioned medication, but I was not once offered any medication all the doctors said is – dementia is just a part of ageing, get over it and move on. All the places we went to seek help there was nothing, just one dark journey.

Community Awareness

Need to have long term thinking...now we are looking at alcohol, drugs, obesity and potential for vascular dementia. I will challenge the minister that there is a whole of government approach. We need a clean environment, clean air, and safe walking places, to minimise the damage to our brain. There is a lot of talk about hospitals, but the hospital is too late, we need a good health care system.

Community Care

The main problem with care was a different person every coming every morning. The strange faces were very confusing! He would tell them to bugger off when asked to be put in a shower and have the pad changed. Family could do it and it was only when the same person came everyday that he would settle down and let the carer do it. The same face and same voice meant that his basic instincts returned and he was cooperative. Providers of care services are given a list of tasks, and need to tick off lists; it’s not about helping the person become comfortable.

I am a case manager for Illawarra, still waiting for client and carer to direct what services they want, not dictated by guidelines. We have 5 CDC packages in Illawarra.

I cared for my mother and husband, luckily I am able to keep husband at home. Most people would like to be cared for at home and die with dignity.

Person centred care is important. We need to get people doing individual projects that suit peoples interests. Also, we need more home care that is person centred.

Residential Care

12 weeks ago mum could walk, talk and eat, then after entering a nursing home she quickly went downhill and suffered 14 falls and strokes. Now she cannot walk, talk or eat. In eight weeks I had a functional mum to nothing. It is heart wrenching, there is a huge impact on family, and I am now terrified of getting it.

I have been working in aged care for over 20 years; my concern is the diagnosis on dementia and Alzheimer’s. When we place people in dementia specific units, we are locking them away. We can’t do this to asylum seekers or to mental health patients. There needs to be a reassessment of residents going into aged care because right now people are never reassessed again. People decline within 6 months to not walking, communicating etc. People with dementia need better respect and better dignity. Look at human rights and compare to people treated in dementia units, it falls short, we are way behind!

The facilities at residential care need to be addressed. The care in Israel only provides accommodation with double rooms. This is an excellent idea as gives comfort to the person with dementia, as nurses are busy with other people.

Respite

I care for my mother, who has YOD. Respite took her for one day, and can’t take her now; too much hard work...all she did was wander. I wanted to stay with my mother while she was at respite but was told I couldn’t. I tried to explain I didn’t want a break from my mother I wanted a break from being her carer, showering her, feeding her. I wanted time with her when I could just be a daughter. They wouldn’t let me and said I had to use this time as a break.

Workforce

Staff to patient ratio needs to be raised greatly.

Education and training for carers in high and low care is the same, they only need a certificate 4. It is disgraceful! If you are in general nursing you can post grad to midwifery, why is there no extra training for people looking after people with dementia?

We need to address how the money is spent. Need money between the people needing care and providing care, need money to educate people, they are not being trained to provide the care that people need across the board. Not receiving information they need to understand about dementia.

End of Life Care

Palliation, people die from this, people should be able to die with dignity, and community nurses shouldn’t have to fight with palliative care about dementia not being palliative because it isn’t dementia.

Younger Onset Dementia

There needs to be age appropriate care assessments. You can’t get an ACAT assessment under 65.

I am tired of hearing the word ‘age’ and that YOD is rare, dementia is not a normal part of ageing, I was 46 when I was diagnosed. It is hard to get appropriate services for YOD. (We need) education for employers, help for children, home and community care, appropriate respite care. Think about palliative care while we are waiting for a cure.

Spouse of YOD sufferer. Like more emphasis placed on YOD. Want to know how many people are here for YOD? (Approx. 1/3 of the room) I work full time and care for husband who has now moved to nursing home. Spoke to a lot of people, different types of support were offered, morning help, but the care workers did not have any training in Alzheimer’s. No help (is available) for a man in 50s with Alzheimer’s. As illness grew, the doors closed. YOD have different needs, we still have a mortgage to pay. (My) husband is the youngest in his nursing home.

Miss out on assisted care between 50 and 65. Need age appropriate services, respite care. Need more training for GPs. There needs to be more training for people on the ground, more funding for research.

My wife is 63 and had 2 years in aged care. Facilities need to look at persons needs, not the aged care. A lot of places would only offer things not appropriate for YOD.

I was diagnosed with Benson’s disease, which affects the visual part of the brain and I was diagnosed with YOD last year. I am 57 now. It hurts is when people say that people who have these types of things are over weight, drink alcohol, and don’t look after them selves. I have done none of these things. I also exercise. I was principle of school in WA...I have lived a healthy lifestyle and used my brain. What part do epidemiological studies play? How much is hereditary? Both grandmothers had dementia, and mother took own life at my age. Is that why my mum took her own life? Is it because she saw what her mother and mother and law went through with dementia?

Support for Carers

I look after mum; all care professionals encourage me to keep mum at home as long as possible. I asked about carers pension at Centrelink, which is means tested. I have a two income family, so I am not eligible and will have to separate from husband in order to survive.

We need to see changes form Centrelink to support carers. Would like to see things like environmental initiatives e.g. solar panels, we need help with houses e.g. ramps, etc, people need support people living in their homes longer.

Research

Challenge to everyone to involve school groups to raise funds for research.
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