Consumers make dementia research better
Involving individuals with lived experience of dementia in research has provided valuable insights that would not have been gained otherwise, an international expert tells Australian Ageing Agenda.
Scotland’s national dementia research network has a group of people with a lived experience of dementia who are at the centre of everything it does.
They call themselves “partners in research,” said Dr Tom Russ – director of Alzheimer Scotland Dementia Research Centre.
“We co-produce or codesign our conference agendas, but importantly, they have a really powerful impact on the research that we do,” Dr Russ told Australian Ageing Agenda at the International Dementia Conference in Sydney last month.
“We try to do our research with them as co-researchers rather than them being participants.”
While it requires more time, it’s both an enjoyable and valuable endeavour, said Dr Russ, an old age psychiatrist based in Edinburgh, Scotland.
“We’ve gained fantastic insights from people with lived experience that would never have occurred to us had we not involved them. So it makes the research better as well as it being more fun for us to do.”
While this partnership approach hasn’t yet spread to commercial trials run by pharmaceutical companies, hopefully that can change in the future, said Dr Russ – whose IDC keynote gave delegates an insight into the latest treatment advances in dementia.
In this interview with AAA, Dr Russ discusses the recent rapid development of approaches for treating dementia as well as his work involving people with a lived experience of dementia:
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