Consumer Engagement in the Aged Care Reform Process

Transcript – DVD

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From regional QLD

Interview 1

My name is Joan Hood, my husband is Edward but he is known as Rob. He is 84 years of age and he has had dementia for 8 years. Well I am just thinking of little basic things that are not there which are terribly important to us and terribly important to our loved ones there. The basic cleaning is not adequate including: pants not being changed (often bad smell), not cleaning their teeth (particularly twice a day as recommended by dentist who visited), not always clean shaven and shirts are sometimes not changed. There have also been incidents of dentures being worn by the wrong person.

Interview 2

My name is Graham Radell, my wife Susan has had Alzheimer’s for 5 years and mother in law for 15 years. My question is that funding for carers and people with dementia is an absolute disgrace. Apart from pension, the carers get $110/fortnight. You have to work 24/7, 365 days. You work out the math! When the person is then transferred to a nursing home, the pension is gone, however you still have to provide the running around for things like medication, shopping, doctors visits, incontinence products etc. It is just not worth it. We need more funding.

Interview 3

My name is Peter Forbes, my wife Rhonda is the carer for my mother in law who has been diagnosed with Alzheimer’s for 5 years. My mother in law has recently become more aggressive and we experience a demonic episode which was unnerving and very upsetting. It is out of control. Our concerns are that there are not enough avenues or accurate information to get emergency help. Day respite is a waste of time because she doesn’t want that. Emergency respite – we need something we can access because nothing is available.

Interview 4

My name is Melinda Tulan, I live in Townsville in far north QLD. I would like to raise some issues regarding the difficulties associated with people from non-English speaking backgrounds. I have been caring for my elderly parents for roughly 12-13 years – they have been in a low care facility for approximately 7 years and during that time a number of things have come to mind. I think the initiative to help people stay at home for as long as possible is great but I don’t think there are enough resources up here for HAC (home and community care packages) and generally there is a bit of a wait list so more resources need to be put towards that. The consequence of leaving people at home for as long as possible means that once they go into care facilities, they are likely to have much more significant care needs which facilities often can’t cater for up here. My issue is regarding food – they have a lot of, for example, sandwiches. And for my parents who are Asian, this is not culturally appropriate. When I enquired about other foods, the only thing they could offer was to provide a bowl of rice with the sandwiches. This again confused my parents because sandwiches and rice is still not appropriate. The staff then stopped serving the rice because my parents were not eating it.

Interview 5

I am June Wilkinson and I live in Townsville. I am no longer a carer because unfortunately my husband passed away after a short stint with dementia. A short stint, in as much as I couldn’t get anyone to diagnose him. I knew – he was frail – to begin with he had a lot of medical problems and was just classed as ‘frail’ at the age of 70, and he died at 75. Diagnosis is the hardest thing to get. I had rails set up in the place and feel very humble that I was able to care for him myself and didn’t have to put him into one of those places.

Interview 6

I am Trisha Henwood, I’m 44 and I have younger onset Alzheimer’s. I live in Townsville and it took 18 months for me to get a diagnosis even though we had genetic evidence that this would happen to me. I have 2 children with autism and I find it very difficult to get services to help them in this situation with a mum deteriorating with Alzheimer’s and nobody seems to understand the grief they are going through. I try to be proactive about educating people about Alzheimer’s and I enjoy doing that.Top of page

Interview 7

I’m Madeline Duffy from Rockhampton. I have a husband with early onset dementia. My problem was trying to get help early on and to get my husband onto the drug Aricept. Coming to the Alzheimer group here in Rockhampton was a help because I came to a seminar called ‘Living with Memory Loss’ and I was then able to get the name of a geriatrician. I wished at the time to get a position where my husband was at. My GP was some support and did send me to someone in the Brisbane area but it must have been the wrong person because he could not see anything wrong with my husband and told me to go home and there’s nothing wrong. I felt like I was hitting my head against a brick wall. Since coming to the Memory Loss, I have been put onto a geriatrician. I believe there is only 2 or 3 in the whole of QLD. I have travelled to the Sunshine Coast to see this lady who then did proceed to give Darryl brain scans which showed there definitely was a problem. We travelled by car, the 620km to the Sunshine Coast. As I’m getting older it is getting harder to do. I just feel it would be beneficial to have a visiting geriatrician. I think most in our group use psychiatrists.

Interview 8

I’m Gwen Simpson from Rockhampton in the regions and over the past 8 years that I have been down to the Alzheimer’s CQ I have ascertained some problems. Number one thing is there is no geriatrician in Rockhampton. There is funding in Rockhampton to pay this geriatrician but we need a building to base this person permanently because the fly-in, fly-out system is not suitable. There are also issues with the doctors – for example, I have had people here who don’t know whether they need black or white tea and then the doctor just gives them a driver’s licence. There needs to be the development of a tests or additional tests to give the doctors a better idea of what they can or can’t do – therefore more training for doctors and in the nursing homes. And more services for carers to keep people with Alzheimer’s at home but with the appropriate resources and training.

Interview 9

I’m Margaret Rosenberg from Rockhampton. Allan’s had dementia from about 67 years of age. He had a major stomach operation - I think the morphine and other drugs bought this problem on. He was treated for Parkinson’s disease for 3 years and it wasn’t until the last couple of years that they’ve diagnosed dementia with Lewy bodies. My problem is getting into short term care – a lot of places have long term care but not say 3-4 weeks. About 18 months ago I had a rather unpleasant experience when I went to take him into a home but I had the doctors tell me he was very high care. They put him into a motel-style accommodation and after about a week they told me to come and get him because they weren’t coping. I lost a bit of heart after that and felt that if there are more safe places for short term care that would be helpful. There is often also a long wait for short term care.

Interview 10

My name is Barbara and I live in Rockhampton. I was a carer for my mother. She began having very noticeable problems with her memory in 2005 and I was very concerned. I took her to her GP and he asked her some very simple questions which she answered ok and therefore he didn’t think there was any problem. There was no suggestion of referring her anywhere, despite Rockhampton not having those services anyway. One of the big problems in regional areas is that people go to GPs and unless they have had personal experience with dementia in their own family, they don’t tend to take any notice of a carer and their concerns. My biggest concern is the lack of medical professionals in regional areas of QLD.

Interview 11

My name is Nadine Hedger. I’m from Brisbane. My mother has younger onset dementia which she started showing signs in her late 40s/50s; however she didn’t get a diagnosis until she was 60 due to the constant diagnosis of depression. The behavioural change in mum was dramatic – anywhere from aggression to violence to complete loss of memory and speech. The main point that needs to be changed in aged care reform is the awareness around dementia as a whole including the issues around the elderly suffering from dementia but also those of a younger generation. Just because of how different the behaviours are of a younger generation. If we had awareness of the different types of dementia then the community would be more aware, early diagnosis, more research, structured treatment plans etc. We don’t have the required agencies for people of the younger generation in terms of respite services. My mum was excluded from care because they catered for the elderly and m because my mum was younger she tended to wander a lot and was more active. I needed her to be in a secure place, which most of the homes are, but because there was an inadequate staff to patient ratio, it couldn’t cater for my mum. So all in all she had half a day of respite before being told she was ineligible for the services within Brisbane. In home care was extremely supportive however because she was high care high needs sometimes we only had 2 hours of care which is not enough time to do shopping etc. It is the everyday level of social exclusion that you feel as a family and because of this disease you are excluded from employment, further education, Christmas, birthdays – everything any other citizen is entitled to you aren’t because you don’t have the assistance there for high care patients. There are stunning residential facilities for elderly care, but a lot of them wouldn’t cater for my mother because of her wandering. I believe there should be more facilities for younger onset dementia patients.Top of page

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