The team at the Wicking Dementia Research and Education Centre are working to change that, with a group of experts in science and aged care collaborating to transform the perception of dementia. 

Listening to Tasmanians living with dementia is at the top of their agenda. 

A public “connecting with dementia” forum on Thursday, to signify the end of Dementia Awareness Month, humanised living with dementia. 

Di Harris, who has dementia, spoke of the reality of life with the condition.  

Ms Harris has had dementia for several years and said she had “got to know it pretty well from the inside out”. 

“A diagnosis of dementia comes with major trauma, the equal of physical trauma,” Ms Harris said. 

“The [effects] of the diagnosis are often overlooked.

“In some respects the shock, loss and grief it causes are made worse because it is not obviously apparent – there’s no death or bereavement; no horrible injuries.

“I look the same as I ever did.”

Ms Harris described how she had only recently come to terms of the impact of the trauma on both her and her family and friends. 

“Although things are changing, the general perception is that those of us with dementia are incapable of determining what is good for us, something that is both repellent and humiliating, as well as being a lie,” Ms Harris said. 

“How is that only a dismally small percentage of people with dementia are working in policy or consultative positions dealing with dementia issues?

“I believe the numbers should at least be on a par with those who do not have dementia.”

Dr Anna King, a leading dementia researcher with the University of Tasmania Faculty of Health’s Wicking Centre, said Ms Harris’ account was “the highlight of the evening”. 

“She very kindly offered to come and give a personal perspective of what it's like to have dementia," Dr King said.

“I suppose her major message was that people with dementia need a voice on how funding is spent, on policies … they need to be consulted, so they need to be on panels that are making decisions."

"Another thing she said that really quite struck me is that we need to focus not just on the disabilities of a person with dementia but to look at what they can do.

“In the end it's about quality of life and everyone deserves a good quality of life, and it's only by looking at people's abilities that we can make the most of that."

The Wicking Centre focuses on three central aspects central to dementia: cause, prevention and care. 

The Wicking Centre co-director Professor Andrew Robinson agreed that listening to those living with dementia was vital in improving the way they are cared for. 

"I think it was really evident [at the forum] when Di spoke,” Professor Robinson said.  

“It was very profound and it's a bit of a wake-up call that people with dementia really do have a need to have a say and to be involved – and of course, that's quite reasonable."

The Wicking Centre is at the forefront of online dementia education. 

Their Massive Online Open Courses (MOOCs) have been hugely successful, attracting participants from around the world eager to learn about dementia for free. 

The centre’s success with MOOCs resulted in The Wicking Centre’s inclusion in a $27.9 million program to educate the workforce providing care for people with dementia. 

The consortium makes up the federally funded organisation Dementia Training Australia. 

The Wicking Centre employs experts with different skillsets, to ensure they can conduct comprehensive, multi-faceted research.  

Dr King studied a Doctor of Philosophy in motoneurone disease at UTAS between 2004 and 2008.

"The particular type of dementia I'm interested in is frontotemporal dementia and that has very close links to motoneurone disease, and it's an early onset dementia,” Dr King said.

“I started working on that and also Alzheimer's around 2008, 2009."

Dr King’s work analyses the way connections between nerve cells can be maintained, as they are lost after the onset of dementia. 

She is particularly interested in the contrast between frontotemporal dementia and Alzheimer’s disease. 

"They're really quite different diseases,” Dr King said. 

“The reason we bring them together is because they both cause dementia, and dementia means a loss of cognitive function."

"Alzheimer's usually starts off with more memory symptoms and a loss of spatial awareness.

“Whereas frontotemporal dementia is often a change in personality and those slight differences in those areas in the brain." 

Dr King said it was unlikely a fail-safe cure for dementia would be found. 

“We find it difficult to use the word cure because that implies that nobody in the world will ever have dementia,” she said.

"The main thing that we hope to do is delay the onset or reduce the risk in as many people as we can.”

Professor Robinson said The Wicking Centre hoped to look further into creating a ‘dementia friendly Tasmania’. 

"[It would involve] communities that are engaged and inclusive of people with dementia," Professor Robinson said.