In an Australian first, a set of guidelines containing 109 recommendations specifically developed for use by health care professionals and those caring for, or working with people who are living with dementia have been developed and released.
The Minister for Health, Ageing and Sport the Hon Sussan Ley MP launched new Clinical Practice Guidelines and Principles of Care for People with Dementia at the Dementia Australia National Consumer Summit at Parliament House in Canberra recently. The guidelines have the potential to transform dementia care in Australia.
For John Quinn who is living with dementia, the development of the guidelines are a great first-step, but the success of their take-up and implementation remains to be seen.
“Too often we get guidelines that are developed and everyone’s all excited about it, but the old saying the proof of the pudding is in the eating,” John said.
It took two years for John to obtain a diagnosis of younger onset dementia after he noticed difficulties at work and with his driving.
“It was a very, very stressful period of time for myself and my wife Glenys,” he said.
The guidelines were developed by the Cognitive Decline Partnership Centre in consultation with 23 experts, support from the National Health and Medical Research Council, people living with dementia and their carers.
Cognitive Decline Partnership Centre, Director and Chief Investigator, Professor Susan Kurrle said the guidelines should help with encouraging earlier diagnosis.
“A lot of people think that memory loss is a normal part of ageing - it isn’t,” Professor Kurrle said.
“One of the recommendations in the guidelines very clearly says “memory loss is not a normal part of ageing and should be investigated” making a diagnosis is important.”
Professor Kurrle said a diagnosis gives people a chance to prepare for a future living with dementia, appoint an enduring power of attorney and guardianship as well as think about where they might want to live when the time comes.
“We also say to people get out there and enjoy your bucket list, having an early diagnosis of dementia does not stop you enjoying trips away, so there are lots of benefits to getting a diagnosis early,” Professor Kurrle said.
Professor Kurrle said of the 109 recommendations a number that include making sure legal issues are dealt with, management of the behaviours that can occur later on in dementia and not using anti-psychotic drugs unless absolutely necessary were key.
Dementia Australia CEO Carol Bennett said considering dementia was the second leading cause of death in Australia affecting more than 353,000 Australians and with that figure expected to rise to almost one million people by 2050 there was lots of room for improvement when it comes to diagnosis of dementia, quality of care, medication management and dementia research.
“It seems kind of remiss that we haven’t had these type of dementia guidelines before,” she said.
Dementia Australia National President Professor Graeme Samuel AC said consumers played a key role in the development of the guidelines to ensure the document is relevant to the needs of people with dementia and their carers.
“These guidelines are an example of the impact that can be achieved when consumers partner with clinicians and researchers,” Prof Samuel said.
John said if these guidelines had been developed when he was seeking a diagnosis of dementia, it would have made an enormous difference.
“I think I would have had the testing earlier,” John said.
John said he would pay particular interest to the guidelines which focus on quality of life for people with dementia.
“There’s this belief that when you have a diagnosis of dementia you go home and you sit there and you vegetate and you wait until you die. That’s not the case. A lot of people particularly with younger onset dementia can perform valuable roles within the community for a long time after the diagnosis,” he said.
The guidelines were developed within the $25 Million NHMRC Partnership Centre: Dealing with Cognitive and Related Functional Decline in Older People (CDPC), which form part of the Federal Government’s Boosting Dementia Research Initiative. The CDPC has developed the Clinical Practice Guidelines and Principles of Care for People with Dementia in consultation with an expert multi-disciplinary Guideline Adaptation Committee convened by the CDPC.