​ROYAL COMMISSION: Dementia support is around end of life, not living

Both living with dementia, Trevor Douglas Crosby, a dementia advocate, and Kate Swaffer, Chair and Chief Executive Officer of Dementia Alliance International, explained the heartbreak of being diagnosed with dementia as well as the bad funding and poor support from organisations and the government.

Mr Crosby explained the lack of dementia services resulted in him moving from his farm of 30 years in Mudgee, New South Wales, to Sydney.

The diagnosis was a life-changer for him, considering his friends and family thought his lacking social engagement and out of character behaviour was due to old age.

“I was dumbfounded [with the diagnosis], I couldn’t believe there was something that could be wrong with indestructible me. The first moment I found out, I tried to speak but I couldn’t. I really understood the definition of being speechless,” says Mr Crosby.

Throughout his journey with dementia, Mr Crosby asserts his positive attitude after his diagnosis and support programs for people with dementia have helped delay the inevitable.

Mr Crosby believes early detection would have helped him manage the disease better and allow him to access programs for people under 65 diagnosed with early onset dementia.

He says his time within support group programs was incredibly positive and had him feeling like normal again, however, these programs have since had their funding cut these programs are no longer available or not as often.

In regards to medication, Mr Crosby says the use of Aricept, a medication to slow down the effects of dementia, has definitely helped, however it will never replace a cure.

He says not enough funding is going towards dementia organisations to find a cure for dementia.

“Everyone knows someone with dementia or going through the hideous trial of what it is going to produce. We know it is going to be ugly. I try to be as dramatic as I can when talking about dementia, because it is dramatic. I want a cure, I want to continue life.”

“Being diagnosed with lewy body dementia has impacted me in many ways. I miss reading books, I concentration levels had worsened, there is no getting away from dementia. It is a cruel ugly killer lurking in the shadows of my life and it destroys the very fabric of humanity – the brain.”

While he believes dementia is a horrible disease, he says that his quality of life has improved due to the people he has met through his advocacy and his focus on living life to the fullest.

Ms Swaffer took to the stand following Mr Crosby, agreeing with many of his statements about the frustrating diagnosis of dementia and aftercare process.

She elaborated further with her vast knowledge of national and global dementia care.

Ms Swaffer was diagnosed with a rare form of younger onset dementia 10 years ago and completed her Masters of Science in Dementia Care in 2014.

Through her own work as a retired trained nurse and experience working with organisations and international dementia advocacy groups, she can see there is a need for governments, clinical practitioners and people to change their view around dementia.

Ms Swaffer is furious with the aged care system, which she considers to be a massive breach of human rights.

“The Royal Commission highlighted the examples of poor care around Australia. We should be ashamed this has happened… We need to move away from institutions and move away from segregation. They are a breach of human rights in every sense of those words,” says Ms Swaffer.

“The sector and governments are taking expensive band-aid options to fix the problem… Aged care was based on hospital care. I worked in the first dedicated dementia unit in SA.

I thought it was a positive step. But we went from that to people being incarcerated in my opinion. We think it’s okay to incarcerate people with dementia.”

Ms Swaffer trademarked a term she uses about the aged care industry called “prescribed disengagement”, when everyone tells a person with dementia to get end of life affairs in order and then “go home and prepare to die”.

She says prescribed disengagement is still occurring now, just as it was when she was diagnosed with early onset dementia at 49 years old.

Ms Swaffer is seeing the practice not only in Australia, but also in over 40 other countries through her work with Dementia Alliance International.

She set the organisation up with the purpose of providing peer to peer support to members around the world. Most members are saying they are still being told to sit back and wait for death, rather than continue living their lives.

Ms Swaffer says a person’s goals for living is imperative to everyone going into aged care, however, they are being ignored.

In conclusion to her statement, Ms Swaffer says there needs to be urgent reform in the sector and she hopes the Royal Commission will make positive change in the industry through changes of care and better funding towards a cure for dementia. Currently, the aged care sector is not liveable in her eyes.

“I would rather die being hit by a bus on the highway, than go and be locked in a dementia facility,” says Ms Swaffer.

Conclusion of this stretch of the Royal Commission

In the closing statement for the third series hearing of the Royal Commission into Aged Care in Sydney, Senior Assisting Counsel Mr Peter Gray QC said the constant theme throughout the eight days was about respecting the humanity of people in aged care.

He gave an overview of the discussion over the last eight days around the complexity of the issues, as well as the large body of evidence gathered by the Commission to review.

Many witnesses outlined the reform needed for people receiving aged care services, including respect, dignity, understanding, compassion, decent food, an enabling environment, cultural background, sexual orientation, and outdoor space living.

“Older Australians in care do no leave their rights at the door of the facility,” says Mr Gray.

“While many different concerns have been raised about perceived causes of substandard care for people with dementia.

“[There is a] need to foster the adoption of organisational leadership and a culture of care, which places the interests and dignity of the resident first.”

The Royal Commission in Aged Care hearings will recommence on Monday, June 17 in Broome, Western Australia.