Consumer Engagement in the Aged Care Reform Process

Alice Springs Aboriginal and Torres Strait Islander Consultation

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Tuesday 1 November, Kunghas Can Cook, Larapinta Drive, Alice Springs
Chair: Judy Buckley

Main Themes

Community awareness

• Education for people early in the disease
• Community awareness is important because of prevalence of stigma
• Education in Aboriginal and Torres Strait Islander and Remote context is different
• Former carers should be involved in providing support and education

Information and access

• Lack of services for remote areas
• Services provided by shires which results in less community control
• Ned for better coordination
• Lack of consistent aged care services in remote areas
• Need for mobile medical centres

Residential care

• Importance of Choice
• Safety rules and regulation make service providers unable to provide choice
• Lack of Staff

Respite

• Like idea of being able to pay family but there is a need for protections
• Case manager model might work well

Workforce

• Staff levels, training and pay
• Need staff experienced in working in the bush
• Need for a career path
• Need for more Aboriginal and Torres Strait Islander workers

Younger Onset Dementia

• Younger onset dementia prevalent in Aboriginal and Torres Strait Islander communities
• Age barriers should be removed from the aged care system
• Aboriginal and Torres Strait Islander Importance of country
• Community spirit
• Different understanding of dementia
• Reverting to first language Top of page

Consumer comments:

Community awareness

We need more education. My sister is in the first stage of Alzheimer’s, she is in so much denial it is not funny. She argues with people about who they are. It is really important that there be more education and proper support. Not to feel embarrassed or that it is an unmentionable disease.

Families say ‘she doesn’t know me anymore; I don’t want to talk to her’. It needs to be demystified.

It’s basic education. We need to go to the community and let them know that you’re not going mad if you have dementia.

We have identified that community education is important, but to do it well in a remote and indigenous context, requires a lot more effort. Special skills and more money needed.

I am 70 now. My first introduction to dementia was when I was 8 and my grandmother became ill. She had 10 children but no one visited her, because they wanted to remember her how she was. It was never talked about; it was as though she vanished.

Education is such an important issue, mainly because I see that the values of the Aboriginal community are changing. In the past Aboriginal cultures would try and retain the elder for culture and language. But now their values are changing, they see the elderly as a burden in an ever increasing way. I can’t see why these issues are not in the curriculum. The children will then start to value the older people in their community. And see them as a resource. These type of concepts need to be embedded in curriculum – primary and high school.

We are looking after an old sick dog. We are thinking what will we do palliative care wise and that it’s good that owners don’t have to see this. It’s a bit like when you put people in a nursing home. There is lacking a capacity among white fallas, it is hard to see people get sick. There is an element of wanting to put people away so we don’t have to deal with them. Indigenous people have a better capacity than some of us to deal with it. It needs to be out there and demystified. I think people have the capacity to deal with it but we need to give them social support.

There is not enough on media, we don’t see enough advertising. Spend the money and put us out there in the media, not just the research and the one ad we see a year of AA.

Take the children out to the old peoples homes, rather than the basketball court.

Just because your parent dies, it doesn’t mean that 18 months down the track you don’t want to talk about it. It could be useful for people who are walking that path to be educated by people who have already walked that path. These people are educated to help other people.

Information and access

For indigenous people in remote communities, if they need particular levels of care, they have to come to Alice Springs. I wonder about their issues, and how it fits with wanting to be with families.

Most aged care services out bush are provided by the shires. This means people have less control in their communities about aged care services.

The shires have control. As long as the shires are working with the community in a way that the community is in control.

Once someone is in a nursing home, no one is allowed to support them anymore; the funding from Alzheimer’s is not allowed to support them.

If our community had resources to look after aged people, we might be able to get coordination around service providers and people in the community who want to help out.

Why can’t we have mobile medical centres, like the mobile dialysis unit?

If the facilities were in town, there would be more social interaction for people concerned. It wouldn’t be hard to get a school to visit etc.

Dementia service coordination needs a lot of attention.

The aged care services out bush go up and down, they can be dysfunctional and people leave. We need to support the aged care services to ensure they can run.

Residential care

We have to treat people as people. Cut out expectation and regulations that prevent us from supporting people.

We have to back off on safety stuff. We had a patient that prefers to eat outside. And staff said no he can’t, in case flies get in his food. Crazy OHS rules.

Staff have to follow a photograph of how to set a meal out. But my mum would only eat with a tea spoon.

Aged care is a regimented institution. Everyone has to be showered by 6, dinner and 7. But someone might want their shower only every 2 days.

Due to the lack of staff, it’s easy to sweep people with dementia under the mat and forget about them.

There was a great place in England, the people could eat when they want, there were falls but there was nice padded carpet. It was energy draining for the staff, as they had to run after people who didn’t want to wear their continence pads; they need to be paid well.

If people have a happy experience, it stays with them. They may forget why they are happy, but they are still happy. When people have choices, they cost less to manage. You shouldn’t fight with someone who doesn’t want to wear the continence pad. Top of page

Respite

I would love to be able to pay family for the services they do.

Cashing out – will this work for people who are vulnerable and marginalised around their money.

You need a case manager, talk about what you want to do for you money for the next 12 months.

It will need to be a very easy system to use.

Workforce

Staffing is a huge issue, and resources and social inclusion.

It’s all about education; the staff don’t know how to deal with people who have Alzheimer’s.

It would be great if we constructed aged care as a career path that young people want to go into.

People are motivated to stay if they are recognised for the hard work they do.

Opportunities in the community to train staff, we need to get away from the silo funding approach.

You get people that are not used to working with people in a town camp setting. You need someone with experience out here to do it, not just an expert from Melbourne.

Carers and nursing staff need education, as so many of them have no idea about Alzheimer’s. It’s so easy for them to provoke bad behaviour.

Its not a career path, and that is a huge issue for indigenous people. If you were in the police force, you would be a sergeant after 10 years.

Is there enough staff available for people who come in from the bush and need respite?

Some staff are incredible, but they get burnt out and move onto a better paid job.

Would the aged care training package be appropriate for Aboriginal people who have English as a 2nd language? We want to encourage more aboriginal people into the aged care career path.

Younger Onset

Maybe age shouldn’t come into it, whatever age you are you should get whatever support you need.

Person support – not aged care. It is prevalent in indigenous people that they get YOD. If it is an aged care thing then they shouldn’t be getting support.

Aboriginal and Torres Strait Islander culture

When aboriginal people leave their community there is a huge void. Country heals people, it is their medicine. When they are back there their whole being, and essence of what makes them Aboriginal is healed. People desire to get back as soon as possible.

We have had remote area nurses in clinics feel nervous about allowing people to come here; we are worried the person might pass away as we don’t have the medical treatment. But when they get there they are better because they are on the land again.

Indigenous people take responsibility, much better than we do in our culture. When you have that community spirit, it could be much better to have the people out in the community because the whole community would become involved in looking after someone.

Living in our Aboriginal community, it is all under one thing, if you assigned a mental problem; you are just seen as ‘mad’. Now there are differences and that needs to be explained to people.

They revert back to their original language after dementia.

If you look at the rapid ageing of Aboriginal populations, they are ageing quicker and younger.

The prevalence is higher, 5 times higher, than in the non-indigenous population. We don’t know the causes, but it is thought to be the link from other chronic diseases. Top of page

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