Voice of dementia missing in aged care

AUSTRALIANS living with dementia have expressed their frustrations at being overlooked in the Morrison government's new aged care standards.

Dementia Australia has delivered a report to Aged Care Minister Richard Colbeck, outlining what people with a lived experience of the disease want included in their care.

The paper offers a dementia-specific response to all eight of the Morrison government's aged care quality standards, which came into effect on July 1.

It recommends a baseline of "support, respect and ultimately, improved quality of life," for dementia sufferers, as well as examples of "gold-standard" care.

Dementia Australia wants a commitment from Senator Colbeck that he will add the organisation's findings to current standards, before the royal commission into ageing delivers its own recommendations.

After meeting with the minister, chief executive Maree McCabe is hopeful he will heed the group's advice.

"The minister was extremely positive, and he shared about the royal commission and the work that is being done to elevate standards in aged care," she told reporters in Canberra on Thursday.

Maggie Jones, 71, whose late husband Gordon Bower experienced Lewy body dementia, says understanding what people with dementia are seeking is particularly important in aged care.

"They can lose the ability to be able to communicate themselves, so it's terribly important that we have people who are skilled and trained in being able to communicate with them and who involve the families as partners in their care," she told reporters.

Dennis Frost, 65 was diagnosed with frontotemporal dementia six years ago.

He says he looks forward to a time when more people with dementia can continue living in the community, because they have the support they need.

"There will be no real difference between having dementia at home and not having dementia," he said.

"I think the ultimate bit is to break down the barriers, understanding what dementia is."

The new aged care benchmarks are a vast improvement on previous models, Dementia Australia's executive director of customer engagement Kaele Stokes told AAP.

But she said they fail to account for the difference between standard and dementia aged care.

"We need to be approaching it from the point of view of the consumer, what they want rather than just clinical outcomes," she said.

Its survey of people with dementia and their families found that no matter their culture, race or sexuality, they all wanted one thing: respect.



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