Consumer Engagement in the Aged Care Reform Process

Darwin Consultation

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31 October, Darwin Airport Resort, Darwin
Chair: Sue Bradley, President Alzheimer’s Australia NT and past carer of her mother
Panel: Ray Norman, Education Consultant Alzheimer’s Australia NT, Ruth Leslie Rose, CEO of Alzheimer’s Australia NT
Number of attendees: 41
Special guest: Peter Styles, Shadow Minister for Senior Territorians

Main Themes

Primary Care

• Length of time to get diagnosis
• Difficulty in getting services without a diagnosis
• Doctors not listening to family carers

Community Awareness

• Experience of stigma and avoidance
• Need for awareness and information about prevention

Information and Access

• Lack of services in regional areas and high cost of travelling to services
• Desire to stay in local community
• Need for more flexible hours (after 5pm and weekends)
• Need for simple information and case management

Residential Care

• Behaviours provoked by inappropriate care
• Importance of environmental design (including outdoor areas)

Workforce

• Better training required- 3 months course is not sufficient
• Difficulty recruiting staff
• Pay inadequate

End of Life

• Concern about end of life choices in NT

Research

• Need for more funding

Special Groups

Younger Onset Dementia

• Lack of appropriate services
• May have increased numbers as diagnosis happens earlier
• Aboriginal and Torres Strait Islander Need for culturally appropriate services for Aboriginal and Torres Strait Islander communities

CALD

• Lack of services for CALD people
• CALD groups not wanting formal servicesTop of page

Comments

Primary Care

My mum was an extremely intelligent women, she was in a facility and never properly diagnosed, just old and forgetful.

My father has other things, such as Parkinson’s disease, but it took a long time to get a diagnosis of dementia. When we got it I wasn’t shocked at all.

It took a good two years to get a diagnosis; we knew there was something wrong with her. The family carer knows that things are not quite right, you want a label put on it and work from there. I was of the understanding that doctors in the early stage only get it right 50% of the time. The doctor said its ok you are just getting older and forgetful. Then when we did get a diagnosis she was in the moderate stage of dementia.

Firstly my husband was diagnosed with depression, when he was finally diagnosed with dementia it was too late for medication.

You have to be careful of diagnosing someone who doesn’t have dementia. A mild cognitive impairment doesn’t always necessarily mean dementia. So you are a little bit weary of giving people a diagnosis, but then you have difficulty accessing services you need if you don’t have diagnosis, catch 22.

I knew my mother in law had dementia when she couldn’t find anything in the kitchen. It took me 4 years going back and forth to the GP who I wasn’t allowed to talk to because of privacy issues. My father in law hadn’t been a good husband, and wouldn’t admit anything was wrong. He would take her to the GP and say everything was fine even though she slept with a knife under her pillow. I ended up having to sit in the GPs office and refuse to leave.

I would have to pay for two consultations so I could talk to the doctor privately. People with dementia can answer all the questions from the doctor, and it looks like nothing is wrong. That’s why the doctor needs feedback from the family carer.

Community Awareness

There is stigma associated with dementia. It is very hard. Over a period of time my mum’s circle of friends drifted away because of her behaviour.

As people get older, they accept everything. We need to change this attitude of a person, that it is not just old age, we need to start making it a public health issue. Excessive care sometimes hurts people, don’t be over protective, and give them the information they need.

Getting my dad into a memory clinic is impossible because he doesn’t have the problem, it’s everyone else.

Community, education and awareness. People should be aware that there are things you can do in your lifestyle to help the prevention of dementia. Good awareness will reduce stigma, and make early diagnosis easier. This will result in less denial and more discussion about end of life etc. We won’t get it unless we get an overall good community awareness program going.

Information and Access

There are many people we can’t access due to the cost of travelling and funding we can’t get. This has not been addressed fully and needs to be addressed.

Although people with dementia are on high level community care packages it only equates to $100 of care a fortnight.

The isolation that people experience is great, from being a carer and also where they live. A person who has lived in the bush all their lives wants to stay there. There is a lack of integration between service providers and a caring community. This is important around the NT.

We have a lot of situations of people living outside of Darwin who have used neighbours for support and when the service provider came they didn’t acknowledge that person as a carer and had strange people come into the house which is distressing for the person.

People with dementia don’t operate from 9.00-5.00. I have one client who would love to watch his grandson play football on the week end and as he can’t drive he can’t go. We need to look outside the square. Because of the sundowning 8am isn’t helpful but maybe 7pm is. Woolworths is open till midnight, so we should look at that as an industry. We need to get the community involved, make them aware that person still wants to participate.

There should be flexibility of hours. Why can’t we have it over the weekend? Have people on board to do the evening shift when family members are busy making dinner.

We need funding for NT to develop a geriatric evaluation unit (GEM). Memory clinic is a new initiative that is working really well.

We go down to Kathryn; there is a lack of services for people of dementia in places like Kathryn. Up here in Darwin there are carer’s groups, in Kathryn you are lucky to get it every 3 months, and there is very little respite.

There needs to be more packages in the Territory for all those elderly people who are living on their own.

The gate way – I would really like to think that it is not some corporate glossy thing that provides minimum standards. I want to know, what will this provider give me? I want to know if they have an Italian speaker, if they have vegetarian days. I want to know what these services specialise in. I want simple instructions about how to get in the system.

People often have to be in a crisis before a service can go out to make a difference.

There are a lot of services, but we need to narrow it down, so the person with dementia is dealing with one person, like a case manager. The case manager can’t be changed over too often because the person with dementia gets upset with changes.Top of page

Residential Care

I have to stay with my husband till early ages in the morning as the staff kept coming back asking questions. They need one electronic record, instead of someone sitting by them having to repeat over and over he has dementia, he can’t remember.

I had a call in middle of night as they were kicking my mother out of the facility because she bit someone. I flew to Sydney, to get to the bottom of it. My mother was woken at 5am in the morning; my response was I would bite you too. The staff were picking on people with dementia.

150 beds cannot create a home like environment. We need a range and diversity of services. That might mean a 6 bed place, or a fire place for people to sit around outside. There should be diversity in how care is provided.

My mum passed away with Alzheimer’s. She was in a brilliant nursing home. It was built with a circuit with hand rails and people always got exercise. There should also be a communication wall. So you can pin up photos of what you have done in the day.

The environmental design for residential homes is important. Such as patterns in the landscape, particularly for indigenous people, the built environment, such as yellow is easier to see as you get older. There should be somewhere to go for sunlight and a sheltered area out of the wind. Art and horticultural therapy is also important.

When I go into a home I want an aged care service that will listen to me, that doesn’t look like a motel, where I can access the outside.

Every aged care facility should be designed around dementia.

When I get old I want an aged care facility that is a happy place. Art and creativity has to be there.

Workforce

Aged care is my passion, I am not in it for the money, I have it in my heart. I pay for training out of my own money. You have got to have the training and you have to have the heart to do it.

It is getting more difficult to get workforce. We have to bring in overseas staff. This has a cost attached to it. Or we bring in short term contract staff that can’t stay here long enough to build a relationship with the clients.

The turnover of paid staff, the government has to bite the bullet on this. It’s a shame we are not giving the level of pay suitable for the level of care needed. Spend money on training them. Maybe not have it free, and reimburse it if they successfully finish it, give them some incentive.

Wonderful thing about NT medical program, it is hex free, so applications of people coming into program is great. Rehabilitation or Comcare payments for traditional healers – need money put towards people in community working with the traditional healers – working in tandem with the medical practitioners.

The training of staff in facilities is inadequate. There is lots of willingness and care, but it is not professional care. I believe only 3 months training is required for staff in residential care. I don’t know any trade that can provide professional service in 3 months.

Training is very close to my heart. I believe whole heartedly about what you’re saying with 3 months not being long enough for training. I would like to see students coming back and renewing their knowledge and improving on it.

We do not value workers in aged care because we don’t pay them enough. Well paid and trained staff is really important.

In every facility I have been to in the last 3 years, the major comment is the pay, recognition and understanding the value of people working in aged care. At least make the pay equal and value of recognise what they do.

I loved working in the dementia ward, but people need to be trained properly. You don’t say ‘’you silly old women you don’t need to milk the cows’’.

End of Life

There is nothing in place to allow us, once diagnosed, to make the decisions that are important to us. We need the force of law, which is available to every Australian citizen except those in the NT.

Research

We desperately need more research. Dementia is the third biggest killer of all diseases in Australia. We get 1/10 of research funds that goes to other diseases. To stop this epidemic we need to push for more research.

Special Groups

Younger Onset Dementia

The aged care criteria is 65 and above. I am concerned about Younger Onset Dementia (YOD), those people fall through the cracks.

I have a concern about YOD. We are diagnosing people earlier and earlier we don’t fit in the aged care system.

One client was 57 years old, clearly demented; he was in dire straits and dehydrated. He was only 57 and not getting appropriate care.

People with YOD can access aged services, but it is not appropriate. Often we struggle with respite services, YOD wouldn’t fit in. It’s not that they can’t access it, it’s that the services are not appropriate.

Aboriginal and Torres Strait Islander Have you got any idea about how you will go about developing culturally appropriate services for the indigenous community? The numbers still at home are much greater than those in services.

There are very few services for remote and indigenous communities. Workforce, access and costs of travel are issues. These costs are not recognised by our government funding.

CALD

Not just indigenous people, but services for multi-cultural people. They have difficulty understanding all the information. They need more information in their own language to help them understand the processes and getting information.

For CALD groups, we need people to accept services.

GLBTI

I want to talk about the difficulties that GLBTI members face when they enter aged care facility. The feel vulnerable and want to move in somewhere that they feel safe. Key priority is training and education of service providers and sensitivity around awareness and sensitivity.

There are a number for Gay men who have HIV. One impact of their drug therapy means they get YOD. Stop talking about aged care, the minister should be the minister for care. If we just have care you can get things to fit together. These young men need to be able to talk to one another. About what they want for the future, including advanced care planning.Top of page

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