First National Memory Clinic Guidelines to Support the Diagnosis of Dementia

A collaboration between the Brain and Mind Center at the University of Sydney and the Australian Dementia Network (ADNet) published the first-ever set of national guidelines for memory and cognition clinics to improve the quality of diagnosis and dementia care.

The Memory and Cognition Clinic Guidelines: National Service Guidelines for Specialized Dementia and Cognitive Decline Services in Australia were written by the ADNeT Memory Clinics research team, in consultation with extensive input from hundreds of researchers, clinicians and other healthcare professionals, as well as those with lived experience of dementia .

Professor Sharon Naismith, director of the Healthy Brain Aging Clinic at the Brain and Mind Center and co-leader of the new guidelines, said they would help raise Australian memory clinics to gold international 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 misdiagnosed about 30% of the time,” said Professor Naismith.

“Memory and Cognition Clinics have been operating in Australia for over 40 years and are recognized as the best environment for a comprehensive dementia assessment. So far, dementia specialists and other staff working in these clinics have not been equipped with standardized guidelines to ensure best practice.

“With the potential for approval of new drugs to counter the effects of dementia in Australia next year, memory and cognition clinics need to be as well prepared as possible,” said Professor Naismith.

Lived experience diagnosing and managing dementia

Deborah Remfry, whose husband John was diagnosed with Lewy body dementia six years ago, said the integrated approach taken by the memory and cognition clinic attending Melbourne helped ease the burden during an extremely difficult time. She said a national resource to help standardize this approach across Australia would help families navigate the difficult diagnosis and post-care period.

“People react differently when they are in shock,” Ms. Remfry said.

“It was all so fuzzy – John’s GP made the initial appointment with the clinic. From there, the holistic approach was exceptional. The clinic’s allied team included an occupational therapist, psychiatrist, doctors and nurses. They worked with John and three months later they had a very respectful team meeting, and together the team diagnosed us.

“I thought – what do we do next, how can I be John’s lawyer?” How do I know if he’s ready for dementia service? ”

“The difference is that they are able to see the whole picture. It relieves some of the decision burden for people who don’t have that experience.

“This integrated approach is a game-changer. A national guideline will be a great resource.

The new guidelines, founded on the principles of person-centered care, fairness 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 diagnostic protocols
  • post-diagnostic support and care
  • effective communication about available services, treatment and counseling for family and caregivers.

The co-lead of the initiative, Professor Perminder Sachdev of the University of NSW, said: “These guidelines will help ensure that clinics across Australia provide high quality services that result in a correct diagnosis and hopefully, a familiar and demoralizing tale changes that being diagnosed with dementia means that person’s life is indeed over.

Memory clinics are currently located in all Australian states and territories and over 130 memory clinics have registered with eDNA. ADNet is a national research collaboration of dementia experts from 16 institutions. The guidelines initiative was a collaboration led by researchers from the Brain and Mind Center and Charles Perkins Center at the University of Sydney, the University of NSW, the University of Melbourne and Macquarie University.

Visit the ADNet page here

Media contact:

Available for an interview: To speak with Professor Sharon Naismith or Deborah Remfry, contact Brain and Mind Center Communications on 0429 526 979

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