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First national memory clinic guidelines to support dementia diagnosis

With 30% of dementias misdiagnosed in primary care, a new set of national clicinal guidelines aims to improve diagnosis and aftercare for families affected by dementia.

A University of Sydney Brain and Mind Centre collaboration with the Australian Dementia Network (ADNet) has released the first-ever set of national guidelines for Memory and cognition clinics to improve the quality of dementia diagnoisis and care.

The Memory and Cognition Clinic Guidelines: National Service Guidelines for Specialised Dementia and Cognitive Decline Services in Australia were written by the ADNeT Memory Clinics initiative Research Team, in consultation with extensive feedback from hundreds of researchers, clinicians and other health professionals, and those with a lived experience of dementia.

Professor Sharon Naismith, director of the Brain and Mind Centre's Healthy Brain Ageing Clinic and co-lead of the new guidelines, said they will help to raise Australian memory clinics to international gold standards and provide a framework for changes in dementia care policy.

"Dementia affects up to 472,000 people in Australia and in primary care, dementia, such as Alzheimer's disease, is wrongly diagnosed about 30 per cent of the time," Professor Naismith said.

"Memory and Cognition Clinics have operated in Australia for over 40 years and are acknowledged as the best environment for comprehensive dementia assessment. Until now, dementia specialists and other staff working in these clinics have not been equipped with standardised guidelines to ensure best practice.

“With the potential for new medication to counter the effects of dementia being approved in Australia next year, Memory and Cognition Clinics need to be as well prepared as possible,” Professor Naismith said.

Lived experience of dementia diagnosis and care

Deborah Remfry, whose husband John was diagnosed with Dementia with Lewy bodies six years ago said the integrated approach taken by the memory and cognition clinic they attended in Melbourne helped ease the burden during an extremely difficult time. She said a national resource to help make this approach uniform across Australia would help see families through the difficult diagnosis and after care period.

"People respond differently when they're in shock," Ms Remfry said.

"It was all such a blur - John's GP made the initial appointment with the clinic. From there, the holistic approach was outstanding. The allied team at the clinic included an occupational therapist, psychiatrist, doctors and nurses. They worked together with John and three months later, they very respectfully held a team meeting, and all together, the team gave us the diagnosis.

"I thought - what do we do next, how can I be John's advocate? How can I know if he's ready for a dementia ward?" 

"The difference is they are able to see the whole picture. It lifts some of the burden of decisions away from people who don't have this experience.

"This integrated approach is a game-changer. A national guideline will be a wonderful resource."

The new guidelines, based on the principles of person-centred care, equity and respect, provide consensus-based, best-practice recommendations for Australian memory clinics, covering aspects such as:

  • equity of care across Australia (including in remote areas)
  • assessment procedures
  • dementia diagnosis protocols
  • post-diagnostic support and care
  • effective communication about available services, treatment and advice for family and care givers.

The initiative's co-lead, Professor Perminder Sachdev from the University of NSW, said: “These guidelines will help to ensure that clinics across Australia provide high-quality services that result in a correct diagnosis and hopefully change a familiar and demoralising narrative that a dementia diagnosis means that person's life is effectively over.”

Memory Clinics are currently located in all Australian states and territories and more than 130 Memory Clinics have registered with ADNeT.   ADNet is a national research collaboration of dementia experts from 16 institutions. The guidelines initiatvive was a collaboration led by Brain and Mind Centre and Charles Perkins Centre researchers at the University of Sydney, the University of NSW, University of Melbourne and Macquarie University.

Visit the ADNet page here

Media contact:

Available for Interview: to speak with Prof. Sharon Naismith or Deborah Remfry, Contact Brain and Mind Centre Communications on 0429 526 979