The Fight Dementia Campaign was born in mid-2011 in the face of two major disappointments for Alzheimer’s Australia. The first was a change in funding structures within the Department of Health that led to uncertainty about funding for dementia and the future of the Dementia Initiative. The second was the Productivity Commission’s final report on Caring for Older Australians that did not make a single recommendation on dementia.
Alzheimer’s Australia decided to take action to ensure that dementia was centre stage in the reform of aged care and in the 2012/13 Federal Budget. As our National President Ita Buttrose said - “we took off our velvet glove and put on our iron fist”. The campaign was launched on 13 October 2011 with a march on the lawns of Parliament House, Canberra. It was the first time in the history of Alzheimer’s Australia that we had taken our advocacy to the streets in such a public way. We were joined by people with dementia, their carers and health professionals whose sentiment was that “at last we are doing something”.
Their stories became the voice of our campaign. Without the courage of so many people telling these stories and effectively getting the message across to our Federal politicians, the campaign would not have been the success it has proved to be.
Soon after the march, Alzheimer’s Australia undertook nationwide consultations on the aged care reforms and heard the stories of thousands of people living with dementia and their families. Although there were some stories of good care, the overwhelming message was that the aged care system was failing people with dementia. A public report, Consumer Engagement in the Aged Care Reform Process, was released in April 2012. Some of the quotes published in the report from people with dementia and their family carers were:
"My wife was diagnosed at age of 57. When we needed help we were refused. We were told to keep away from the aged care homes. This is because it is only available for people over 65. The PC Report on Caring for Older Australians should be changed so it is inclusive of all Australians no matter their age.”
“There is also the stigma, my mother walks around with a teddy bear. That is her security. I took my mum to see a professor at the hospital. A hospital staff member was in the elevator with us and said ‘what the hell is she doing with a teddy bear?’Where is the dignity and respect for elderly people?”
“More education is needed for staff. I asked [the staff] why one lady wears one slipper and one shoe and I was told it was because it was just her personality, one of her peculiarities. I looked and she had an infected toe, the staff didn’t even know about it. I have a great concern about residents with dementia.’’
“I’ve been told that if my mother does not die fast enough in a palliative care setting she will be sent away. I am fighting for my mother to die in a palliative facility because I am told she is not worthy.’"
Our policy and advocacy work has laid the basis for significant improvements in the quality of life for people with dementia.
- In August 2012, with the support of the Australian Health Ministers, dementia was made a National Health Priority Area. This was a welcome announcement as it recognised dementia as a major chronic disease and placed it equally alongside heart disease and cancer.
- The 2012 Aged Care Reforms passed into law in June 2013. Alzheimer’s Australia strongly supported these reforms because they provided more community services and greater choice of services through consumer directed care. These reforms also reflected a new determination to tackle dementia both as a health and aged care issue. The reforms included action on timely diagnosis, making hospitals safer, dementia risk reduction, additional resources to provide quality dementia care and, for the first time, support for younger people with dementia.
- In September 2013 the Coalition announced a commitment to invest $200 million in dementia research over five years. This commitment gives Australians hope that future generations might escape this terrible chronic disease through better understanding of dementia and how to modify its progression.
Elements of the Tackling Dementia Package within the 2012 Aged Care Reforms have also began to be put into place including:
- The appointment of 40 key workers by Alzheimer’s Australia to provide support to people with younger onset dementia and their families, and to assist with service development.
- Work by the Australian Commission on Safety and Quality in Health Care in developing strategies that will ensure dementia is part of the mandated standards of acute care.
- The rollout of the world’s first publicly funded dementia risk reduction program: Your Brain Matters.
- Funding of the new dementia supplements in community and residential care in recognition of the extra costs of dementia care.
Looking to the future
We are pleased with what we have been able to achieve but we are also aware of how much more has to be done. We know from talking and listening to Australians living with dementia that social isolation and stigma are two of the biggest challenges they face in everyday life. Promoting active social engagement in the community by people with dementia and their carers is the best way to ensure a better understanding of dementia and also to dispel some of the myths. We all have a role to play in helping people with dementia to sustain their independence, dignity and sense of purpose in our communities.
Dementia will remain a pressing issue as the number of people with dementia in Australia is set to increase to about 900,000 by 2050 – the equivalent of a city three times the size of Canberra. Our latest campaign document Creating a Dementia-Friendly Australia sets out our vision for action on dementia over the next three years.
We are proud to say that we are committed to achieving this necessary social reform and you can help by becoming a dementia champion.