Hazel Hawke's daughter on dementia board

Mon 3 Mar 2008

Hazel Hawke's daughter Sue Pieters-Hawke says she will help the Rudd government understand the challenge of dementia from a carer's perspective.

Ms Pieters-Hawke has been caring for her mother, the ex-wife of former prime minister Bob Hawke, since she was diagnosed with Alzheimer's disease seven years ago.

She and former Brisbane Liberal lord mayor Sallyanne Atkinson have been appointed to co-chair a 16-member group to advise the government on dementia.

Ms Pieters-Hawke said she was lucky enough to live next door to her 78-year-old mother on Sydney's north shore, which gave Mrs Hawke a "sense of family and a sense of location".

"So ... even though she's cognitively quite diminished she still subjectively has a good sense of her own life," she told ABC radio.

"And this is something that is possible with dementia. And to be able to achieve that for all Australians with dementia in a variety of ways is, I think, an objective that many people who work in the field would like to see."

Sufferers and their families faced a big job trying to navigate their way around the system to find out what support was available to them, she said.

"I bring ... a carer perspective (to the advisory group)," Ms Pieters-Hawke said.

"In ideal terms we would like to see all Australians have a life that has dignity and care to it.

"And I think this committee and the steps this minister are taking are very good ones in this direction."

Her mother's disease had progressed since her diagnosis, leaving her "cognitively much more damaged" but still cheerful, Ms Pieters-Hawke said.

"She enjoys her sense of place, she enjoys that she's got family nearby, she knows her neighbours, she walks in the area a lot, we look at the birds, she's got a wicked sense of humour, she's become quite risque and naughty," she said.

"I think for a very, very tragic disease that often goes very badly, we feel incredibly fortunate that we are having a relatively positive (experience) halfway through it.

"We are suffering a lot less than I see some families suffer."

Mrs Hawke revealed her Alzheimer's in 2003 to raise awareness of the disease and later published a book, Hazel's Journey.

Ageing Minister Justine Elliot said it was "absolutely right to have that focus on carers" stemming from Ms Pieters-Hawke's appointment.

The group would bring together the best knowledge and experience to advise the government on the challenge, she said.

More than 200,000 Australians have dementia and the number was expected to double within the next 20 years as the population aged.

"Hazel Hawke is one of the most loved Australians, and I certainly admire both the fact that she and Sue Pieters-Hawke a number of years ago came out very publicly to talk about dementia," Ms Elliot told Sky News.

"And it's wonderful that Sue has agreed to be co-chair of this new advisory committee and to bring all of her experience and wisdom about dementia to this group."

Ms Elliot said she also was pleased to announce $9 million in grants to tackle, which would make a "real difference" to sufferers and carers' quality of life.