I’m 61 and living with dementia: I need ScoMo to honour his Federal Budget promise

People living with dementia and their carers are anxious. They are anxious because the Federal Budget to be handed down on Tuesday will have a very real and direct impact on their lives.

I know because I am one of them. I am 61 and living with dementia.

I am one of those consumer voices who has contributed to the 20 aged care reports in 20 years – in my case since I was diagnosed at the age of 55. This budget is about me, my future care and the future of all the people I represent as the Chair of the Dementia Australia Advisory Committee.

I am writing this because the power in the hands of the federal government is simultaneously momentous and ominous. It makes me so nervous that the fate of my care seems to be in the hands of so few.

Have the politicians been listening and learning every time me or someone else living with dementia has delivered a speech, attended meetings with them or shared our experience and expertise in the media? When they have shaken our hands, thanked us for our time and stood next to us in photos later shared in their own newsletters, websites and social media accounts, have they genuinely been concerned? And have they been horrified like me and so many others with impending futures in aged care about the stories that came out of the in response to the Royal Commission into Aged Care Quality and Safety and sadly, despite the two-and-half years of intensive reporting and scrutiny, are still being exposed in the media?

On Tuesday, we will know the answers to these questions.

Besides the recent sweeping statement promising $10 billion over four years for aged care to be included in the budget, the lack of mention of dementia and detail on commitments makes me and so many others worried. The royal commission recommended $7.5 billion per year is needed.

At the outset of the royal commission the prime minster said, “if you want to deal with a problem, you have to be fair dinkum about understanding the full extent of it”.

I think the royal commission has provided the prime minister with full detail and a clear understanding about the extent of the problem – and for dementia. He and his cabinet now have the detail in the recommendations on what is required to provide quality care for people living with dementia.

On the release of the final report he said “the royal commission has now, I think, set out a very important roadmap, which I think will establish generational change in our country when it comes to aged care”.

This generational change will not happen unless the prime minister now shows he is fair dinkum and takes the lead to establish the change required. Me, one of the almost 500,000 Australians living with dementia, and the 1.6 million people involved in our care are relying on you.

The final report included all Dementia Australia’s recommendations, which are included in the Roadmap to Quality Dementia Care that was presented to government in January, in anticipation of the final report. Dementia Australia’s Roadmap is not only recommendations but more importantly solutions – how to implement those recommendations and make quality dementia care real.

This roadmap has been developed with us – with people living with dementia and with carers – over an extensive and comprehensive three years of consultation and collaboration. Dementia Australia did further consultation with the aged care sector.

The solution is:

Dementia Support Pathways – when we are experiencing concerns, needing diagnosis and support, we need to be able to access timely information and support services. Our quality of life depends on it. Dementia Australia is the best gateway to these services.

Build workforce capacity – me and all others impacted by dementia deserve respect and dignity in care and to be supported by an aged care workforce which is skilled, has appropriate and continuously improving knowledge and is inspired and supported to provide quality dementia care at all times, in all places.

Dementia-friendly design – appropriately designed physical environments enable us – people living with dementia – to be as independent as possible for as long as is possible. The evidence is extensive. Environment and building standards were implemented for people with physical disabilities many years ago – this same approach is needed to support people with cognitive impairments.

If the government adopts the Roadmap to Quality Dementia Care, I can guarantee the prime minister there will be a collective sigh of relief around the country by all people impacted by dementia that finally after years of reviews and reports we will see the generational change become a reality.