The StepUp for Dementia Research helpdesk is a service for people who want to learn more about what we do, have a specific inquiry, want to register over the phone, are having trouble using the online portal, or have an inquiry about a particular study. The helpdesk...
Latest news and research outcomes
Category: Volunteer FAQs
What can I do if I have more questions?
For general questions or comments, please contact us via email at stepup.research@sydney.edu.au. You can also call our helpdesk at 1800-STEP-123 (1800-7837-123).Your suggestions about how StepUp for Dementia Research can improve as a resource for you are always welcome!
Will StepUp for Dementia Research contact me regarding other matters?
Yes, StepUp for Dementia Research may need to contact you from time to time regarding your StepUp for Dementia Research account. Also, because providing a good experience and service is important, StepUp for Dementia Research would like to contact you periodically to...
How do I remove myself from StepUp for Dementia Research?
You are free to withdraw your information at any time without giving a reason. (Note: volunteer wishes to withdraw take precedence over those of a proxy.) If you decide you no longer wish to remain on StepUp for Dementia Research, you can do so by changing your...
What is APOE4 and how am I tested?
The APOE (apolipoprotein E) gene is involved in making certain proteins. People who carry APOE4, a version of the gene, have an increased genetic risk of developing Alzheimer’s disease. Knowing whether someone carries APOE4 helps scientists look for early brain...
What are plaques and tangles and what are the tests to see these?
The hallmark of Alzheimer's disease is development of plaques and tangles of certain proteins in the brain. The plaques, sometimes called clumps, are made up of a form of protein called amyloid. The tangles are due to clustering of a protein called tau within the...
Does dementia only happen to older people?
No. The onset of dementia usually occurs after the age of 65. However, about 5% of people with Alzheimer’s disease will develop symptoms before the age of 65 - sometimes in their 30’s and 40’s.
Is dementia the same as Alzheimer’s?
No. Dementia is a general term relating to a loss of cognitive function. There are several types of dementia, which are caused by different underlying changes in the brain. The most common form is Alzheimer’s, accounting for about two thirds of dementia cases. Other...
How should I describe my symptoms?
Most dementia research studies are looking for particular people. Often this can be based on the severity of someone’s dementia. To help ensure you are matched to the right studies, you are asked to describe your symptoms or the volunteer’s symptoms selecting from...
Additional questions for persons living with dementia
StepUp for Dementia Research asks about symptoms and a few medical conditions and tests which may be unfamiliar to you. You do not need to answer these questions, but providing this information may help match you to studies. The information provided here may help you.