StepUp for Dementia Research is a research participation and engagement service, a “one-stop shop” that connects individuals with researchers conducting dementia research studies. StepUp for Dementia Research is part of StepUp for Research which supports two streams of research, dementia and ageing. A separate website, called StepUp for Ageing Research, supports ageing related research.
StepUp for Dementia Research makes it easier for people to find out about dementia research and take part in research studies. The goal is to make it possible for everyone who wants to be involved in dementia research to get the chance to do so and to help researchers find the people they need.
One of the big difficulties researchers face is finding enough participants for their studies. At the same time, many people are looking to participate in studies, but don’t know where to find them. StepUp for Dementia Research solves this problem by connecting people who want to participate in research with the right study.
Dementia is the second highest cause of death among Australians. In 2018, there are an estimated 425,416 Australians living with dementia. There are numerous questions about diagnosis, treatments, prevention, and best care, for which there are no clear answers. Research into dementia will help find these answers.
StepUp for Dementia Research was initially funded by the Commonwealth Government Department of Health and run by the University of Sydney. Professor Yun-Hee Jeon, Susan and Isaac Wakil Professor of Healthy Ageing, leads the program. The website and technology behind the service have been created by Professor Jeon and her team, in collaboration with the University of Exeter and using expertise from University College London, UK.
The service is completely free for all volunteers and researchers and used only to recruit people to ethically approved research studies. It is used by (1) approved researchers working in universities and in healthcare across Australia to list their study and (2) by volunteers like you to express interest in potential involvement.
Anyone living with or without dementia, 18 years or older and residing in Australia can register.
Volunteers are needed
We encourage people living with dementia, carers, families and friends of people with dementia to register on StepUp for Dementia Research because researchers need all kinds of people to participate in studies. Volunteers are needed for studies looking at things like early diagnosis, dementia prevention, and treatment and care – this includes people with dementia, carers, family and the wider public. Anybody can help advance vital dementia research through participation in studies.
Note: Some research studies are funded to support participation by providing a small token of appreciation or covering some of the costs of being involved, such as travel, but this varies depending on the study.
No. Once you have registered your interest, the website will check if your details match to any of the current studies, and then continue to check automatically every time new studies are added. It may take some time to match to a study, as explained in “Will I match to a study?” When a match is found, you will be contacted through your preferred manner (by phone, email or letter). Detailed information will then be provided about the study, both through the website and by the researcher, and you will have the opportunity, only if you wish to do so, to answer any further screening questions. You may ask as many questions as you like. You can then decide if you want to take part, and can stop taking part at any time.
StepUp for Dementia Research helps you to become involved as a participant in dementia research studies. It will also help you learn more about the research in your local area, region or other parts of Australia, and help signal to researchers, the government, media and the public that Australians are interested in participating in research.
If you do take part in a study, you will have the satisfaction of knowing you could help others and contribute to future insights into dementia and its causes, as well as early diagnosis, better treatment, and quality of care. You may get to meet other people who share your experience: who live with dementia themselves, are carers, or have family members with dementia. Or you may simply find the process an interesting and valuable way to spend your time.
Please note that participating in StepUp for Dementia Research is not a path to a diagnosis. If you are worried about your memory, or have symptoms that you think might be dementia-related, we recommend that you seek the advice of a healthcare professional. More information on memory loss and dementia causes and symptoms is available at
More information on memory loss and dementia causes and symptoms is available at
StepUp for Dementia Research is completely free for all volunteers, researchers and users.
Information security is very important to us. StepUp for Dementia Research will keep your personal information private, secure and confidential. The information entered into our website is encrypted, secured and stored in Australia with the Microsoft provided ‘Azure’ service. Azure meets a broad set of international and industry-specific compliance standards, such as General Data Protection Regulation, ISO 27001, Health Information Portability and Accountability Act, Federal Risk and Authorization Management Program, Service and Organization Controls Report 1 and 2, as well as country specific standards, including the Australian Information Security Registered Assessors Program, UK G-Cloud and Singapore Multi-Tier Cloud Security. Rigorous third-party audits, such as those done by the British Standards Institute, verify Azure’s adherence to the strict security controls these standards mandate. StepUp for Dementia Research keeps an audit log every time a record is accessed.
Your information is managed by StepUp for Dementia Research administration based at the University of Sydney. Only the StepUp for Dementia Research administration and helpdesk staff will be able to access your information after you register and until you match to an ethically-approved study. At that point, your information will be available to the approved researchers of that study. These approved researchers may be employed by universities, healthcare providers or commercial organisations pursuing activities for medical benefit. They are working on ethically-approved studies with employers that have agreed to StepUp for Dementia Research terms and conditions and data processing agreements. All researchers agree to operate in accordance with The Australian Code for the Responsible Conduct of Research and comply with the National Statement on Ethical Conduct in Human Research.
A full list of organisations using the service will be made available once the service is open to researcher registration.
If you have questions or concerns, please view our Volunteer Information Sheet and our Privacy Statement, or contact us at stepup.research@sydney.edu.au or 1800-STEP-123 (1800-7837-123).
Researchers define the kind of people they seek and the StepUp for Dementia Research system matches that description to the information you provide.
Once you match to a study, researchers from that study will be able to see all the information you submitted into the website. If you do not match to their study, the researcher cannot see your information. They can use the information to see if you are likely to be suitable.
Sometimes StepUp for Dementia Research might not have all the information needed to provide a really accurate match. When this happens, the researcher might ask you to provide additional details, for example, to state if you live with a carer or maybe have had a specific health issue in the past few months. This extra information will help the researcher decide if you might be a match for study participation.
StepUp for Dementia Research helps many different types of studies. These studies include but are not limited to
The service is designed to match people with appropriate research studies based on their health information and research interests. There are studies focused on each type and stage of dementia, as well as lots of research participation opportunities for people without dementia.
All studies on the service have ethical approval. This means that they have been reviewed by independent panels to make sure there are protections for the rights, safety and wellbeing of participants.
StepUp for Dementia Research involves three steps: registering, matching, and then deciding on participation.
After completing registration, you will receive general StepUp for Dementia Research information, including an information booklet with details on how to update your information (including removing yourself from StepUp for Dementia Research) and what will happen next.
Once you have completed an online registration, you can access information and screening forms for any studies you match to. People without online registrations cannot see this but will be contacted by researchers with study information and screening forms.
The next step, independent of registration method, will be when you hear from researchers hoping you might be interested and suitable for their studies. Once you hear from the researchers, you then decide whether you want to take part or not in their study.
Whether you match to a study and how long it takes will depend on your information and circumstances.
There are many factors that can affect your likelihood of being matched and approached to take part in a study. These include whether you have a diagnosis of dementia, your age, whether you are a carer for persons with dementia, whether you can travel and if so, how far you can travel if necessary for the study, and so on.
StepUp for Dementia Research aims to provide volunteer opportunities for everyone on StepUp for Dementia Research. We know having to wait to volunteer can be disappointing for people keen to take part in research. As the service grows and develops beyond New South Wales and Western Australia, there will be many more studies added and, hopefully, something for everyone.
Studies may have very specific eligibility criteria around a specific age range, diagnosis, or health status. The StepUp for Dementia Research website describes all the studies that are looking for people through StepUp for Dementia Research in the news section. You may have heard of a study in the media or through a friend, but if you don’t see that study in your matches, you are not a match – please do ensure your information is up-to-date and accurate for best matching. (You can do this by login.)
If you are matched to a study, this does not necessarily mean you are eligible to take part. Further checks may be carried out to make sure you are eligible (see [How will researchers use the information I provide?]).
If you are eligible, you will be contacted by a member of the research team who can explain the study to you and you can then decide whether you want to take part or not.
StepUp for Dementia Research will send you at most one email alert per day if and only when you match to a study. When you first join, it is possible that you will receive an alert listing multiple studies and you may be contacted by more than one study team to talk about different studies. However, StepUp for Dementia Research asks researchers to review any notes on your record to ensure you are not ‘over’ contacted and tries to ensure you aren’t contacted more than twice on the same day. StepUp for Dementia Research will record which studies you take part in and will prevent you from being matched to new studies when these or your current study require that you participate in only one study at a time.
Choosing to get involved in research is an important personal decision. You will never have to participate in a study unless you decide it is the right thing for you or the person you helped to register. It is also important to discuss the possible advantages and disadvantages of participation with the researcher, your own doctor, nurse or other health professional, or family member or friend.
Your personal or health information may be out-of-date or entered incorrectly. You can login into your account to review and update your information.
Please also note that the recruitment area is defined by postcodes, which can be across state/territory or local council boundaries. For example, if your postcode is 4380, you can be matched to studies looking for volunteers in NSW as well as studies looking for volunteers in QLD. Also, if your postcode is 2193, you can be matched to studies looking for volunteers in Ashfield, Canterbury and Marrickville. In such cases, you may still be contacted by researchers looking for participants beyond your state/area, due to the overlapping of postcodes. It is up to the researchers to further discuss with you about your eligibility and enrolment for that study. For studies that are conducted online or over the phone, you may still be able to participate in the study if the geographical boundary is not a major issue.
Registration is a simple process, and it should only take between 5 and 15 minutes. The time involved depends on whether you are registering for yourself or someone else, and if you’re registering as a person living with dementia (because we have a few extra questions for these people).
You can register online or you can call our helpdesk at 1800-STEP-123 (1800-7837-123) and our friendly and supportive helpdesk staff can answer any questions as well as helping to register you over the telephone.
Alternatively, you can complete the registration form and send it to StepUp for Dementia Reserach, Rm234, RC Mills Building (A26), University of Sydney, Camperdown, NSW, 2006.
If you have already got an account for StepUp for Ageing Research, and you would like to register for StepUp for Dementia Research, you do not need to duplicate the process.
You can log in to either StepUp for Dementia Research or StepUp for Ageing Research, and go to Profile Information and click the edit button for Participate in which field of research which is the question for “StepUp for Research supports two streams of research – dementia and ageing. Which of those fields of research would you be interested in participating in?” and select your preferred answer option.
If you register online, you nominate an email address as your username and then create a password.
If you forget your password it can be reset using the ‘forgotten password’ link or by calling the helpdesk for assistance. Passwords can only be changed once every 24 hours and accounts will be locked for a period of 30 minutes after 10 failed authentication attempts.
StepUp for Dementia Research passwords must not contain your name or username or date of birth. Passwords should contain a combination of uppercase, lowercase, digits and/or non-alphanumeric characters (e.g., exclamation mark). Some delimiters (e.g., ampersands) are not permitted, so it is easiest to avoid those.
If you register by helpdesk or post, the helpdesk staff or StepUp for Dementia Research administration will assist you in creating an account.
Yes, you can register on behalf of one or more persons providing that (1) to the best of your knowledge, the person you have registered has not expressed any reluctance to participate in StepUp for Dementia Research and (2) it is your opinion that registration is in their best interest.
If the person you wish to register is able to provide consent, we recommend that you help them to register for themselves. If you instead register a person as their representative (Proxy), you must discuss participation with this person, if possible, and you will be required to provide information about yourself and your relationship with this person (the volunteer). Proxies are also required to provide documentation supporting their legal status to represent the volunteer and proof of identification. If the Proxy is not able to provide this documentation then the volunteer cannot be registered by the Proxy until they are able to do so.
If you register on behalf of another person, the registration steps are similar to registering yourself but also include a series of questions regarding your relationship to the volunteer and their capacity. Please note that we do this in order to ensure we operate ethically. As well as indicating your relationship to this volunteer, you will state you have the volunteer’s consent to act on their behalf, and specify who (you or the other person, directly) should be contacted about new studies. When you login, your home page will allow you to distinguish between the studies matched for each of the different volunteers (e.g., you, your parent and your friend) associated with your account.
If the volunteer you register matches to a study and is approached by a research team, full consent would be sought by the researchers before the volunteer takes part in their study. That means that it would never be possible for someone to become involved in a particular research study without that person (or another person with authority to act on their behalf) having properly consented.
When you first register you will be asked a few simple questions about yourself or the person you are registering. This includes address, date of birth, details of any diagnosis and brief details of any past major health issues.
Once you have registered, you can revisit your record and add extra information at any time – this improves your chance of matching to studies. For example, you can list any medications you take or update symptoms.
The information StepUp for Dementia Research collects was agreed to in consultation with people living with dementia and their carers, as well as researchers and healthcare professionals. This has been tested in the UK over the past three years, and has been updated to reflect the systems in Australia.
StepUp for Dementia Research has also been tested with our Public Involvement Panel, comprised of people living with dementia, carers and former carers, and professionals working in dementia-related fields.
Reminder: You own the information you provide. We will not link this to your health records and will only ever update the information with your explicit permission.
You can update your information at any time. You can log in and provide your unique username and password through the website, or call the helpdesk to change your details. If you have registered on the telephone or via post, you will be asked some personal information that provided during the registration process.
If your information is incorrect or out of date, you may not match to the correct studies and StepUp for Dementia Research or the researcher from a matched study may not be able to get hold of you. So, please do keep your details up-to-date.
If you don’t log in to your account or update any information after three years, and following three alerts, StepUp for Dementia Research will automatically remove you from the system.
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.
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 four options: mild, moderate, severe and unknown. Everyone experiences dementia in their own way and the definitions which follow are general in nature.
Mild (Early stage)
Typical symptoms of early stage dementia include: loss of memory for recent events, repeating oneself, becoming slower at grasping new ideas, finding it harder to make decisions and showing signs of confusion.
Moderate (Middle stage)
Typical symptoms of middle stage dementia include: needing more support to help manage day-to-day living, needing frequent reminders or help to eat, wash, dress and use the toilet; repeating the same question or phrase; becoming increasingly forgetful, particularly of names; and failing to recognise people or confuse them with others.
Severe (Late stage)
Typical symptoms of late stage dementia include: pronounced loss of memory, with inability to recognise familiar objects, surroundings or even loved ones, although there may be sudden flashes of recognition; an increasing amount of help needed with day-to-day activities, becoming more dependent on others for care needs; and becoming increasingly frail, and possibly starting to shuffle or walk unsteadily.
Please view ‘The progression of Alzheimer’s disease‘ on Dementia Australia’s website, which describes these stages in more detail.
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 common forms include vascular dementia, Lewy body dementia and frontotemporal dementia. You can find out more about types of dementia at: https://www.dementia.org.au/information/about-dementia/types-of-dementia
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.
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 brain cells. If you have been diagnosed with dementia or have participated in clinical trials in the past, you may have undergone tests (i.e., a positron emission tomography (PET), magnetic resonance imaging (MRI) scan, or lumbar puncture) and may have been told whether the tests revealed the presence of amyloid plaques and tau deposits in your brain or cerebrospinal fluid. The presence of these biomarkers provides evidence of Alzheimer’s disease and assists with diagnosis. Another important feature of Alzheimer’s disease is the progressive loss of brain cells. However, loss of brain cells is common to most forms of dementia and therefore is not specific to Alzheimer’s disease.
Alzheimer’s disease can be only speculatively diagnosed based on memory and cognitive assessments alone, since declines in memory and cognition are common to other forms of dementia. Therefore, biological tests are becoming more widely used.
For further information on Amyloid Plaques, Professor John O’Brien from the University of Cambridge explains more in this video.
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 changes in study volunteers and compare the effectiveness of treatments for people with different versions of the APOE gene. About half of the people carrying one copy of the APOE4 gene will never develop the disease. The risk of Alzheimer’s is increased further for people with two copies of the APOE4 gene.
APOE testing is not routinely available on Medicare. Some people may be aware of whether they have it if they have taken a private genetic test or been told as part of a previous research study.
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 account setting or by calling the helpdesk at 1800-STEP-123 (1800-7837-123). If you have already been matched to a study, we recommend you call the helpdesk so that we can alert relevant researcher(s).
After you have withdrawn your information will no longer be made available to researchers, and you will not be contacted about any further studies. Withdrawing from StepUp for Dementia Research will not affect any existing research studies you have chosen to join. (Note: To help us to understand who is using StepUp for Dementia Research we will continue to use non-identifiable data, such as your gender and age, for analysis purposes.)
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 ask for your opinion, experience and feedback. If you agree to be contacted about these things, StepUp for Dementia Research may contact you regarding polls or surveys about your experience and your participation in these is confidential and voluntary. StepUp for Dementia Research would like to keep you informed by periodically sharing the newsletter with you. Please note that you will be able to opt out of this kind of contact by changing your account settings.
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!
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 is run by a small team of staff and is open from 9am-5pm Monday-Friday. If you call out of hours, you can leave a voicemail and we will get back to you as soon as we can. Please be aware that because we are a small team, if we are experiencing a high volume of calls we may not be able to take your call straight away during business hours. Some inquiries might take us up to two days to respond to. Please be patient while we endeavor to offer the best service possible. Please note, we are not a general dementia support helpline. For general dementia support, please call the National Dementia Helpline at 1800 100 500. You can also send any inquiries to us via email at stepup.research@sydney.edu.au.
