Involve people impacted by research
This year’s NHMRC National Institute for Dementia Research (NNIDR) Australia Dementia Forum brought together a broad cross section of people to hear how the latest research in dementia prevention, treatment, and care will benefit people living with dementia, carers and families.
Held in Hobart, on June 13-14, the Australia Dementia Forum “Shining a light on the impact of dementia research” convened more than 400 experts in the dementia field and featured over 200 oral and poster presentations.
The CDPC model of research was evident throughout the event with several researchers, industry partners and consumers in attendance presenting their work. CDPC Operations Manager Jennifer Thompson presented the poster “Cognitive Decline Partnership Centre: partnerships impacting care for people with dementia” describing co-production of an evaluation project on exercise prescription in aged care.
The CDPC supported six consumers with attendance at the conference. During networking breaks they were encouraged to be part of the CDPC exhibitor stand where numerous Centre resources were freely available to attendees, and consumers provided information on their involvement in research. T-shirts with the logo “Involve people impacted by research in Research,” left attendees in no doubt their inclusion in the research process was essential.
Below, consumer dementia research advocate, Danijela Hlis (pictured at right with fellow consumer Elaine Todd) recounts her experience at the Forum:
“I started my week on Wednesday morning, when the group I am involved with held CALD Dementia Research Action Plan Stakeholder workshop. I am glad to confirm there is some improvement in the inclusion of CALD communities.
“We later met with our Public Involvement Panel for StepUp for Dementia Research. It was great to receive acknowledgments from both Ita Buttrose, as well as Prof Rowe (ADNeT) and I urge you all to go on-line and register. This project will hopefully bring researchers and consumers closer together.
“I think it works well when a consumer and a researcher present findings together. For example Meredith Gresham and I both stood by the poster on pain management that had both our names on it. If we hope for healthy collaboration, this is the only way to go.
“And finally, yes, we (people living with dementia and their carers/partners, enablers) are just a drop in the ocean, and more hard work is needed to conduct successful research and obtain valuable research findings through real involvement and collaboration between researchers and consumers.
My training and education as a CDRN member (the Consumer Dementia Research Network) taught me how to liaise with researchers, how to use dementia language guidelines, how to show respect at all times. I would recommend that this training/mentoring model be continued,” Danijela Hlis said.
