Alzheimer’s Australia and other members of the National Aged Care Alliance scored a king hit over the Easter holiday weekend with wall to wall national media coverage of aged care reform and dementia specific messages following the launch of two reports. 

Minister for Mental Health and Ageing, Mark Butler released the Summary Report on the Conversations on Ageing, compiled by Council on the Ageing Australia (COTA), on Saturday 7 April, to coincide with the World Health Organisation’s World Health Day 2012. This report encapsulates the views of more than 3,400 older people and their carers from around Australia who attended 31 ‘conversations’ to enable people to express their needs and concerns about ageing and their expectations of a reformed aged care system. [see AAA’s separate article on this report.]

The Alzheimer’s Australia Report, released by the Minister on Easter Monday, presented the findings from a series of sixteen separate community consultations around Australia, conducted by Alzheimer’s Australia, to give people with dementia and their family carers the opportunity to contribute to the aged care reform process.

CEO of Alzheimer’s Australia, Glenn Rees welcomed the release of the report, Consumer Engagement in the Aged Care Reform Process, by the Minister and thanked him for taking part in a number of the consultations.

However, according to the report, the feedback about the system for people with dementia is not good.

Mr Rees said the overwhelming feedback of those consulted was that the aged care system is not working well for people with dementia, and even less so for people from diverse communities.

The report found that consumers have no clear pathway on how to access services and once consumers do find some support, it is often inflexible and cannot cope with the special needs that people with dementia and their carers require.

Above: CEO of Alzheimer's Australia, Mr Glenn Rees

Shocked by stories

Mr Rees attended 12 of the consultations and said that even after 12 years as CEO of the organisation, he was still shocked at some of the stories that he heard.

“There is a dramatic contrast between the experiences of the people with dementia and family carers who benefitted from timely diagnosis and referral to services, and the overwhelming majority of those who were traumatised by poor diagnosis, lack of information and care services that had next to no understanding of dementia,” Mr Rees said.

“People with dementia and their carers don’t know where to turn to receive services and support that will actually help them even though dementia is a core function of aged care services with over 50 per cent of aged care residents with a diagnosis of dementia.

“It is clear that aged care reform that does not give priority to dementia will fail.

“And it is time the health system took dementia seriously as a chronic disease within a public health framework.

“Sadly it is clear too that it is not just a question of more funding and services but a lack of knowledge and respect for people with dementia in the way they are treated.”

Government acknowledges deficits

Launching the report, Minister Butler agreed that the current aged care system was failing people with dementia, describing the report as ‘sober reading’. 

He said it was clear from the feedback received through the conversations that the issues that continue to beset the provision of care for people with dementia have not been given the prominence they deserve in the debate about the quality of aged care. 

“Across all 16 consultations, the overwhelming view of older Australians is that the aged care system is simply not meeting the needs of dementia sufferers and their families,” Mr Butler said. 

“For many older Australians ‘dementia specific care’ is matched by the reality of locked wards. Many families gave examples where the health of their loved ones suddenly declined after entering residential aged care. 

“The level of care being provided to dementia sufferers was raised as a key concern by families and carers. The use of physical and chemical restraints including antipsychotics in some residential facilities can be distressing to families and carers. 

He said that while families want to keep loved ones living with dementia at home for as long as possible, the current system does not provide adequate support and assistance to enable people to remain at home. 

“Community care packages on offer are inadequate and inflexible. Long waiting times, lack of transparency in administration costs and artificial barriers in what services can and cannot provide often leave families feeling confused. The care available is clearly not meeting the needs of people with dementia. 

“It is also clear from the consultations that older Australians and their families want staff appropriately trained in all aspects of dementia, and paid accordingly.” 

“As Australians, we enjoy one of the longest life expectancies in the world but we need to make sure that those extra years are years of quality,” Mr Butler said. 

“Tackling dementia will be a key consideration in the Government’s assessment of the Productivity Commission report.” 

Dementia is the single biggest age-related disease facing Australians; its incidence is soaring with 1,600 new cases every week yet there is no cure.  Without a major research breakthrough, the prevalence of dementia will double over the next 20 years. 

The Alzheimer’s Australia Fight Dementia Campaign has provided a roadmap to Government about how to do it and that is by providing $500 million in the 2012-13 budget.