Lived Experience Blog: Underlying Conditions in Dementia

Written by David Ross
David Ross has supported a number of Brain Health ARC activities and recently spoke at the annual SDRC conference, where he shared his thoughts on contributing to research as an expert by lived experience.

David has kindly offered to share some of his talk here, where he discusses the importance of listening to people who have studied at the University of Life.

There is so much we don’t know, making it difficult to understand the early signs and symptoms of a developing dementia and how best to treat the individual. A cure for the various forms of dementia has so far eluded us, perhaps due in part to the many differences between individuals and other underlying health conditions. As a person of lived experience I may not have insight into all of the research taking place, but from my perspective we appear to be following standard pathways, bypassing alternative routes in determining potential reasons for a condition or why a condition deteriorates due to neglected or overlooked other health conditions.

There is a growing awareness that lived experience (which my mother described many years ago as, The University of Life,) is just as important in research. To follow just the one course is sometimes missing the obvious.

The problem is that lived experience doesn’t live forever, we only gain knowledge and experience over time.

We are not getting any younger and we need to seriously embrace that experience now. To quote an old cliché; strike while the iron is hot!