What is this study about?
Older people with dementia may wish to take part in research that seeks to better understand diseases or find new treatments. An Advance Research Directive is a document where you write down your wishes about being involved in health-related research. In the future, if you become unwell and are not able to make decisions, your Directive will tell people your wishes, such as your family, your doctor or a researcher.
The researchers are exploring the views of people with dementia about making Advance Research Directives. The information they collect will help them improve these documents for further use.
Who can participate?
You are eligible to participate if you are:
- aged at least 65 years
- have a confirmed diagnosis of dementia from a medical professional
- live in the Newcastle or Lake Macquarie regions of NSW
- are able to provide informed consent
- are able to participate in English.
What would you be asked to do?
If you agree to participate, you would be asked to read some sample Advance Research Directive documents. This should take around 20 minutes. You will then be asked to participate in an in-person discussion with a University researcher. This should take around 60-90 minutes. The researcher will ask for your feedback on the sample documents, and about your views on the process of planning for future involvement in research.
COVID-19 safety protocols will be followed, including physical distancing, use of hand sanitiser or wipes, and optional use of masks for participants who prefer this as an extra precaution. The researcher will meet with you at a place convenient for you, which may be your home. You are invited to ask a family member or other support person to take part in this project with you.
For further information, please contact Nola Ries, a researcher at University of Technology Sydney (Ph: 0405 080 348 or Email: [email protected]).
This study has received approval from the University of Technology Sydney Human Research Ethics Committee (Approval no ETH20-4674).