Consumer Engagement in the Aged Care Reform Process

Perth Consultation

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3 November, Cambridge Conference Centre, 350 Cambridge Street, Wembley, WA
Chair: Ellen Skladzien
Attendees: 26

Main Themes

Primary care

• Time to get a diagnosis

Community Awareness

• Need to increase awareness of dementia services through AA
• Experience of stigma and avoidance

Information and Access

• Use of a broker to find a suitable service
• Difficulty getting meaningful and reliable information about services
• Multitude of different forms to fill out

Community Care

• Need for continuity across levels of care

Residential Care

• Not enough physical activity in care services
• Lack of engaging activities for person with dementia
• Importance of relationship between carer and person with dementia and valuing the ‘human touch’
• Overuse of medication

Respite

• Concerns about cashing out in terms of responsibility and potential for exploitation
• Day Centre model works well
• Informal respite through activities with friends

Workforce

• Training for staff
• Difficulty implementing best practice because of systems and policies in place
• Staff are leaving because of better pay in mining

End of Life Care

• Importance of getting legal affairs in order early in the disease

Support for Carers

• Need to know what to expect
• Benefits of AA services

Special Groups

Younger Onset Dementia

• Difficulty with getting a diagnosis
• Lack of appropriate Services

People with Dementia

• Frustration of being aware of losing memory and language skills
• Importance of continued involvement in hobbies
• Benefits of community awareness and supportTop of page

Comments

Primary Care

The early intervention can only occur if the family doctors recognise the early onset. My wife went for 6 years without a diagnosis seeing a psychiatrist and psychologist. So we weren’t able to get support early in the disease. We were not aware of AA. Then when we went to them we followed their advice and now we have no problems

Community Awareness

Friends are important. Once you didn’t speak about cancer and now you talk. At one time people would never sit like this and admit they have a problem. Fortunately we are going forward. We went to a lecture this morning with a professor and it was excellent. I think we are lowest on the low line for any charity.

When we first went to AA people were afraid and embarrassed to say anything. Now days we can all have a joke about it. It should be open, for the government and everything.

There are a lot of people out in the community who don’t know where to go for the starting point, and where to go to get a diagnosis. I have heard from some clients who have said once they get a diagnosis their friends drop away.

We found AA at the point of diagnosis. We were told to contact them. Someone I know whose husband has dementia she had no idea that AA existed, so the is a need for public awareness.

Information and Access

My father is in care in Melbourne, we hired a person who was responsible for recommending a choice of 3 facilities. We are very happy with it, centrally located and it is staffed by every possible person in the world, white and black. What sold it to us was that over 80% of the residents are male. My point is we employed someone to do the searching for us, it costs $500. It shouldn’t be necessary to employee someone to find somewhere for you and to make sure you get the basic level of care.

A facility might be rated 5 stars for me but might only be rated 3 stars for you, as you might not like swimming.

The government puts out a general form for applying for all the services, then each place has their own form, it becomes a mess.

Difficulty in finding good solid reliable information.

Community Care

A friend had a perfect community package. Last week her carer came in and said I have bad news. Our company that has been going for 10 years has not had its contract renewed. Now my friend will not have personalised care, it will be on a roster and they will not know who will come into their house. There has to be something about the relationship between the carer and the consumer.

Residential Care

What degree of training do carers get that go into nursing homes? My wife is in a nursing home, they move her with a lift, and she sits in a chair all day, with her clothes all screwed up after they have taken the hoist away. They don’t care.

My father has Alzheimer’s and is in residential care. They are quite often bored. They have crafts and a bus trip but there is not enough staff to provide extra activities. Even something as simple as a news paper reading in the morning, they can only do it once a week, it is not enough for them.

My husband went into a privately run home. It was great, so many activities. Then it was sold an all of sudden money counted, staff deteriorated. It is sad that money is overriding the care.

I would like to see a link between the accreditation of the facilities and the quality of education of the training of the staff that are providing the care. There is no emphasis on this; staff are rotating through the facilities. The care given depends on the knowledge of the staff that they receive that day.

We go visiting people who are in facilities, you think wow a lovely clean place, and seem to be very efficient. And yet when you talk to someone you buddy up with, they want to get out, they don’t want to be there. There are terrific and awful places around, but to me there shouldn’t be bad places, there should be a government authority that checks on these places. If you are looking at a facility for a loved one do they need to be rated?

They have a list of all the activities, and when you go up there is no activities and no variety. It doesn’t seem right.

So many facilities are working so hard to meet the accreditation and they forget the human element. There should be more emphasis placed on the feedback from the residents in the facility. That way the feedback is coming from the residents, not the staff.

Basic care just is not there. And good training. If you start from empathy and caring then you get good care and more of it, and more choice.

Humanness, friendly smile and ‘are you ok?’ this is driven by the culture of the organisation, not accreditation. Get back to basics.

My husband was being over medicated at one stage, I knew he was difficult and loud, so I knew the medication was for benefit of other patients and I had to accept it.

More continuity of care, chopping and changing between different stages of Alzheimer’s and also when you change between packages.

Some places only do low care, then they need high care and have to move to a different facility and it causes more trauma. Top of page

Respite

In England the disability services, my friend gets a paraplegic, she get money to employ who she wants, and I think I wouldn’t like that responsibility.

There is a danger of exploitation for services.

I have a minor bit of respite. After a day or two, the staff who was treating him in respite couldn’t cope and he ended up in hospital because his blood sugar levels were all over the place. So in the future I would like someone to just come in and replace me. I think that would suit a lot of people.

I think to be able to cash out would be of assistance for us as we live out of the city.

I did it for a friend, and it was a very rewarding experience. We had a lovely couple of weeks. No real problems, I just looked after her and made her meals for her.

Even now when my father is in residential care, I visit him every day. I feel if I go on a holiday that he will miss out. I can’t access respite care but I still feel I can’t go away for a long time.

When Val needed respite, friends took me down the coast to go fishing, I feel comfortable and enjoy myself and feeling in a family type situation.

Its awkward, I love being with Judy, I don’t want to go anywhere and be without her, I will take her with me.

I have the benefit from a day centre at AA, there is a lot of companionship and the carers are terrific. It makes the world a bit better.

Workforce

Sometimes the trainees are frustrated because they hear about good practice but the systems and staffing in the facilities is inadequate to allow them to do good stuff.

When you go around facilities, and given 10 minutes, how do you asses the care is good? It’s almost impossible. Staff ratios which I thought mattered don’t matter. You can get inflated numbers as some places include receptionists.

All the staff are evaporating to work up in the North West for $200,000.

End of Life

One of the first things they told me was look into the legal aspects of representing my mother. Everyone treated my mother as an individual, but a number of times I had to force my way in and override my mother. We had to go to the tribunal and get court orders so that service providers had to listen to what my sister and I were saying.

We have power of attorney, but I can sign it but it feels like I am giving all of me away.

You need to do it so fast, it we did it and then a month later my wife would not have been considered competent.

My father is 97, he went into care last year without handing power of attorney to anyone, because no one bothered to ask him.

After workshops with AA, and the attention brought to legal requirements. We having enduring power of attorney but we haven’t gotten around to advanced care directives.

Support for Carers

I would like my husband to know where to go to find out what stages I am with dementia and what to expect. He has brought a clock so I know what day it is and don’t ask it 50 times a day.

I think when they get to a bad stage, and you are stressed that’s where AA and south care help.

Special Groups

Younger Onset Dementia

YOD is creating lots of problems for early diagnosis; they don’t fit into the aged care mould.

There is no places for younger people who have to go into care; they get dumped into care with older people.

Experiences of People with Dementia

I have 51 years that someone has told me what to do. I don’t remember things, I forget your name, and mostly you don’t remember those things. And you just have to think, that’s what I have got. Even when I talk to you, I’m thinking things but I can’t say them to you. I have semantic dementia.

I think having AA is great. It has helped me immensely, I said no way! Do you know what my nick name used to be in school, I had such a good memory. In my mothers generation if they couldn’t remember something you didn’t go around them. But the doctors are kind and caring, and it is not a joke. I think it is important for us sufferers and the carers. If you like your gardening do your gardening, I love cross stitch and I still do it.

I was at shopping centre and couldn’t remember how to get out. You get panicky. I just walked to one of the guys and said I have dementia and I can’t remember how to get out. He was so kind. I keep doing that.

I got the disease 5 months ago, I am frightened. I am learning and listening. I wish there was someone who would help me with my memory. I forget where I put things. It comes back to me after a while.Top of page

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