On the 23rd of July the Dementia Learning & Research Community held its first E-networking event. This event was only open to members of the Dementia Learning & Research Community, and was an opportunity for members to connect with each other and discuss ideas around dementia care and research in Australia and abroad.

Key points raised in the discussion:

• Changes are needed in how dementia care is managed to be a comprehensive, whole of health approach.

• Accurate and timely diagnosis needs to improve, with recognition of symptoms occurring earlier in life.

• There needs to be improved understanding of the underlying cause of dementia in individuals, to help with more appropriate therapy and navigating treatments.

• Support groups can be really valuable for people living with dementia and their carers to have connection with others.

• The concept of dementia diagnosis and care navigators was discussed:

  • Understanding and navigating the healthcare system post-diagnosis with dementia can be difficult.

  • Many are unaware of who to go to, which specialists or healthcare professionals can help with which aspects, and how to access these healthcare professionals.

  • Navigators could help with all of this, plus link people in with clinical trials, research projects and provide information about living with dementia.

  • There was acknowledgement from the group that an initiative like this would require considerable funding, but similar models have worked overseas (see the Admiral Nurse model in the UK for an example). We need to look to those models to understand how and why they work so we can get something implemented in Australia.

  • An example from one of our New Zealand based members was given, discussing the strengths-based work that navigators do, supporting planning and providing therapeutic advice where appropriate.

• The importance of hearing from and leading with people with lived and living experience was discussed, in understanding needs and improving implementation.