Dementia patients and their families have been asked to assess the quality of care available to them. Their reports are far from satisfactory. Alzheimer's Australia says dementia patients and their carers are being let down right across the health system. The Federal Government has promised to use the report to help decide how to improve the system.
The report was commissioned in response to the Productivity Commission's review, Caring for Older Australians, and included 16 consultations nationwide attended by about 1000 people as well as an online survey. The feedback revealed dementia sufferers and their carers find the system complicated, inflexible and largely unable to meet their needs.
Alzheimer's Australia chief executive Glenn Rees says even after 12 years at the organization he is shocked by some of the accounts. “Really there's a whole litany of problems, from delays in diagnosis, failure to refer to services by the general practitioners, poor quality residential care and staff in hospitals who don't seem to understand dementia,” he said.
He says conditions are even worse for patients from non-English speaking backgrounds. “They have particular problems finding doctors who understand their needs or can deal with them in their own languages, and of course language and cultural understanding is a problem across the range of services,” he said.
“We know the budget is tight, so we've focused it on things that really matter - a timely diagnosis, investing in dementia behavior advisory services, so that family carers and staff in residential care have access to the best advice available on how to relate to people with behavioral difficulties,” Mr Rees said. “Over $200 million of our $500 million, if the Government responds positively, would go into dementia research.”
Ageing and Mental Health Minister Mark Butler attended some of the consultation sessions around Australia and says it was a damning indictment of the system as it operates at the moment. “Families talk about having to wait on average more than three years to get a proper diagnosis of dementia,” he said. “Families talked about stories in the hospital system where hospital staff are often unable to meet the needs of people with dementia in their hospitals. But the main purpose of these conversations was to hear experiences, and perhaps most importantly expectations, that people have about the aged care system.”
Mr Butler will not say when the Government will present its response to the Productivity Commission's report, or if there will be a funding boost in this year's budget. But he says it is a priority for this term of government. “The Alzheimer's Australia pre-budget submission does pick up on a number of the things that we've heard in our conversations,” he said. “Getting better diagnosis in the community for people so that they can make arrangements as soon as they possibly can as a family. Getting better arrangements in hospital systems, getting better research, but most importantly perhaps, making sure that the aged care system is built around the needs of people living with dementia. In some cases, well more than 50 per cent of residents in nursing homes have a dementia diagnosis. So making sure that staff have the training, making sure that facilities have the systems in place to deal with dementia is a very strong focus of our aged care reform.”
There are 280,000 Australians with dementia with the number set to reach 400,000 within ten years.
New neuroimaging marker may identify persons at risk of dementia in future clinical trials