MUCH as the public now accepts disabilities such as paraplegia as part of everyday life, they must allow dementia sufferers into the mainstream.
And carers should give those with dementia as big a stake in decisions about their future as they reasonably can, including end-of-life decisions, a leading international authority on dementia says.
Julian Hughes, a consultant in old-age psychiatry in Britain, says society remains uncomfortable with dementia, and governments are yet to recognise it as a significant health issue.
“Research funding, for instance, is lagging hugely behind other areas such as cancer,” Professor Hughes said yesterday, noting that funding for Australian dementia research in 2007-09 was $22 million, compared with $110m for cancer and $60m for diabetes.
Dementia is the third-leading cause of death in Australia, behind heart disease and stroke. About 257,000 people have dementia, expected to rise to more than a million by 2050.
“As the numbers rise, funding will need to increase by a factor of six to eight times to keep pace,” Professor Hughes said.
Professor Hughes, who today begins a week-long speaking tour on behalf of Alzheimer’s Australia, says society must play its role in ensuring those with dementia retain as much quality of life as possible.
“As soon as it’s known someone has dementia, friends often disappear, even quite early on when the person is just a bit forgetful. They think it might all be a bit too awkward,” he said.
“But attitudes must change. Those friends can adjust, let the conversation go with the flow, accept the person with dementia may be living within a few minutes of experience, so you may have to repeat your stories. But what’s the harm in that? If they are enjoying it, then it’s still a meaningful experience.”
Professor Hughes said society should not consider dementia as an inevitable consequence of ageing because only about 20-30 per cent of those older than 80 have the illness.
He said carers must be wary of taking over decision-making just because their loved one had been diagnosed with dementia.
“A patient of mine was a lifelong runner, but the moment he was diagnosed with dementia everyone conspired to stop him running, fearing he would get lost. He used to run with others but they wouldn’t show up, and his wife and GP told him to stop.”
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