How the lived experience is shaping dementia research
Author: Sally Grosvenor – NHMRC Cognitive Decline Partnership Centre, Australia
Meera Agar – University of Technology Sydney
Louise Heuzenroeder – Dementia Australia
Susan Kurrle – University of Sydney, Cognitive Decline Partnership Centre
Kate Laver – Flinders University, South Australia
Jennifer Thompson – University of Sydney, Cognitive Decline Partnership Centre
There were an estimated 46 million people living with dementia worldwide in 2015. This number is predicted to double every 20 years so that by 2050 over 130 million people will have dementia.
Governments and drug development companies around the world are channeling research dollars to find a cure for dementia however to date there has been little success. Improving the quality of life of the person living with dementia and their carers through improved quality of care in the hospital, community, and residential aged-care setting is proving to be one area where we can have a positive change.
The NHMRC Cognitive Decline Partnership Centre (CDPC) acknowledges that innovative research programs in this complex care environment are required. The voice of the person living with dementia can have real impact on how this research is driven and communicated.
Here we discuss how involving consumers (people with dementia and their care partners) in research has altered the way the CDPC communicates its findings. Consumers provide a unique understanding of effective dissemination strategies to maximise consumer and community uptake. Examples of these include addressing areas such as appropriate and inclusive language and the most appropriate formats (online, community seminars, video etc) to disseminate findings.
This presentation will provide examples of how the stories and experiences of people living with dementia have shaped how CDPC research is communicated. Two case studies: the development of the Clinical Practice Guidelines and Principles of Care for People with Dementia and the associated plain language Consumer Companion Guide, and new online resources for Advance Care Planning, will illustrate how this model of co-creation enhances research translation by providing publically accessible information about best practice care for people living with dementia.
The author has not yet submitted a copy of the full paper.
Presentation type: Individual paper
Area of interest: Influencing policies through science communication