Three years to diagnosis not good enough

John Watkins
In a briefing to New South Wales Parliamentarians at Parliament House today, Alzheimer’s Australia NSW chief executive officer, John Watkins, will call for a public awareness campaign to help people with dementia get a diagnosis sooner, so they can start to better manage the illness.
A survey published in the Medical Journal of Australia in 2008, found the average time between when symptoms were first noticed in a family member and before a firm diagnosis was 3.1 years.
“It’s not good enough that someone with dementia has to wait, on average, three years to get a diagnosis,” Mr Watkins said.
“The community needs to be much more aware of the warning signs so they can recognise when something might be wrong and go to their doctor to get help sooner. A diagnosis can also help give control back to people and allow them to plan for the future while they are still able to do so”.
Alzheimer’s Australia NSW is calling for support to run a similar public health campaign to that which was run by its sister organisation in the United Kingdom, which resulted in increased awareness and diagnosis of the disease.
Under the Alzheimer’s Society, ‘Worried About Your Memory?’ campaign, information materials about the disease were distributed to GP surgeries and pharmacies throughout the country.
A booklet was also made available to people who were worried about their memory to help them understand more about memory loss and to help people who were worried to seek advice. This was supported by a General Practitioner (GP) education program.
A survey conducted by the society found that up to half the respondents who requested the ‘Worried About Your Memory?’ booklet went to visit their GP. Nearly 40% of respondents who requested the booklet said they sought help earlier than they would have done and 1 in 5 received a diagnosis as a result of taking action.
As well, 1 in 7 GPs noticed more people asking about memory problems since the launch of the campaign.
“This is a highly effective campaign that is helping people get back some much-needed control over what can be a devastating and heart-breaking disease,” Mr Watkins said.
“With prevalence rates in Australia dramatically on the increase, action on this is urgently needed.”
There are currently 230,000 people with dementia in Australia and one in three of those lives in NSW. By 2030, the number of people with dementia in Australia is expected to double to 465,000, and grow even further by 2050 to more than 730,000.
“This has the potential to place a huge burden on the health system, let alone the wider community. A recent report by Access Economics is already warning of a shortage of more than 150,000 paid and unpaid carers by 2029, which is alarming,” Mr Watkins said.
Joan Jackman, who has been caring for her husband, Michael, for the past 15 years, will also speak to parliamentarians. Ms Jackman said it took about six years from the onset of symptoms until they got a conclusive diagnosis of dementia.
“It’s worrying and it’s frightening because you know there is something wrong, but you don’t know what it is,” Ms Jackman said.
“It has a huge impact on your relationships and on how you function together as a family. His capabilities were changing and he lost his job, and we still didn’t know what was going on.
“Eventually getting that diagnosis meant that at least you knew what you were dealing with”.