The following Communique was developed at NHMRC National Institute for Dementia Research’s Dementia Care Forum 2017: Involving Consumers in Research towards Better Care Outcomes. The Forum took place on Wednesday 18 October as part of the Dementia Australia National Conference 2017, held at the Melbourne Convention and Exhibition Centre, Melbourne. The Forum was attended by 29 participants comprising people with dementia, carers, researchers, and representatives from service providers, research organisations, peak bodies and government.
Participants worked together to answer four questions that were intended to drive conversation about how we can better involve people with dementia, their carers and families, and the wider public in dementia research. The four questions were:
- How do we ensure our care research delivers optimal outcomes for people with dementia, their carers and families?
- What’s working well? What can be improved?
- What can we introduce to provide for greater speed of translation and benefit at the “coalface”?
- What are our priorities for action?
A summary of the key points from the discussion is provided in the Appendix.
On Thursday 19 October, NHMRC National Institute for Dementia Research hosted a booth at the Dementia Australia National Conference to give conference participants the opportunity to provide their input on the above four questions.
Notes from the feedback provided from the Forum and the booth were then processed to develop the following Communique. The Communique and discussion summary were then presented to forum participants at a follow-up workshop on Friday 20 October, following the conclusion of the Dementia Australia National Conference, for further refinement. There were 17 participants at the follow-up workshop and the Communique contained in this document has incorporated their verbal feedback.
The Communique is intended to articulate the vision, values, and purpose of the NHMRC National Institute for Dementia Research in creating an environment where people with dementia, their carers and families and the wider public are actively involved across all stages and types of dementia research.