Last week, I was privileged to be one of 17 people with dementia to participate in a Parliamentary Summit, alongside 44 family care partners, the CEO Carol Bennett, President Graeme Samuel and a number of staff from Alzheimer’s Australia.
From the media release: “The Communique has been developed by consumers from across the country attending an intensive two-day National Consumer Summit at Parliament House in Canberra, to help shape the beginnings of a National Dementia Strategy. Mike Bryan who was diagnosed with younger onset Alzheimer’s disease two years ago attended the Summit with his wife and carer Linda Bryan.
“It is important for consumers like me to be included in the Summit. Especially with a diagnosis of dementia, I have an important contribution to make to the discussion around the funding for dementia and the way in which we are supported by the Government and the Community. It’s about improving the future situation for people who have been diagnosed with dementia,” Mr Bryan said.
Mrs Bryan says it is critical that consumers are the drivers of future policy around dementia. “I am pleased to be in a forum in which I have a real say in the issues that confront me as a carer. My hope is that the recommendations from this Summit will result in a workable and fully-funded model for dementia care that is truly consumer-directed,” Mrs Bryan said.”
At the Summit, after our hard work on Day 1…
We unanimously called for a funded National Dementia Strategy with measurable outcomes which builds on the National Framework for Action on Dementia 2015- 2019.
Although not all of our suggestions made the final Communique, most of them did, I would like to publicly thank the CEO Ms Carol Bennett and her incredible team at Alzheimer’s Australia not only for working so hard to ensure we were heard at the best possible time in Parliament, but also for funding it, including all travel, accommodation and other expenses such as taxis and food. Whilst there may be changes ahead in how they engage with the consumers, their continuing commitment to the consumer voice is appreciated, and the more voices they get to hear, the better representative they can be.
We asked for, and asked that Alzheimer’s Australia advocate on our behalf for a National Dementia Strategy not only to be implemented, and that it addresses the following priorities to:
- Develop culturally appropriate dementia support that responds to the needs of people from diverse backgrounds including culturally and linguistically diverse, Aboriginal and Torres Strait Islander people, the homeless, people living alone, people with younger onset dementia and the LGBTI community
- Promote risk reduction
- Tackle the stigma and discrimination associated with dementia and support social inclusion and participation
- Improve access to timely diagnosis and high-quality health care
- Provide care and support in the community that facilitates independence, social engagement and effective support for informal carers
- Ensure access to high-quality residential care and publicly available information about consumer experience and quality of care
- Improve end of life care and support for people with dementia
- Sustained investment in dementia research
- Implement consumer directed care that leads to real choices and better outcomes for people with dementia and their families
Develop a strategy to better support carers of people with dementia.
I’d like to stress here, that in no way did my blog on Saturday or my poem on Sunday represent any dissatisfaction with Alzheimer’s Australia national office or the Summit. I realise in hindsight, it could have been taken that way, and I also apologise if that happened as it was not my intention.
The full communique can be downloaded here…
Alzheimer’s Australia (2016) clearly outline the future: Dementia is the chronic disease of the 21st century, and currently there are more than 353,800 Australians with dementia and this figure is expected to increase to almost 900,000 by 2050. More than 1.2 million Australians are involved in their care and the cost of dementia on the health and aged care systems is calculated to be at least $4.9 billion per annum.