Get involved in research

Dementia & ageing in Australia

Research into dementia and ageing is increasingly important for Australia’s future. Older Australians have shaped the society we live in today – they are our teachers, mentors, and loved ones. However, ageing is also associated with a number of diseases and health conditions, such as dementia, cancer, heart disease, and more.

Unfortunately there is so much that we don’t know about dementia and how we can maintain health as we age. We also have a long way to go in our attitudes towards older generations. The Royal Commission into Aged Care showed the devastating impact of ageism upon this population’s quality of life and access to human rights.

Research can help us improve care & change attitudes, so that growing old is not seen as a burden, but rather a celebration of resilience.

About StepUp for Research

StepUp for Research is a research participation and engagement service that connects individuals with research studies. There are two programs – StepUp for Dementia Research and StepUp for Ageing Research.

This service was established by Professor Yun-Hee Jeon to address some of the challenges involved in research. While it’s clear that we need to know more about dementia and healthy ageing, researchers face obstacles such as:

• Finding the right people to participate
• Financial cost of recruiting participants
• Recruiting people is time-consuming, which means that studies might need funding extensions
• Studies with fewer participants limit the effectiveness of research

StepUp for Research also makes it easier for people to express their interest in being involved in research. Previously, there weren’t any centralised and inclusive pathways to join a research study. Most people were referred by their clinician or a recruitment agency. StepUp is free and simple to use, which makes research more accessible for all.

You can read the media release announcing the launch of StepUp for Research here >

What is dementia research?

When you think about research studies for dementia, you might be imagining clinical trials for new medications. This is one part of it, but it’s a very broad field – dementia research includes anything that helps us to better understand, manage, or treat dementia. 

These studies help us test new medicines, understand better ways to care for people with dementia and support carers, identify risk factors & possible prevention strategies, and learn how to better diagnose and eventually cure this disease.

Some types of studies that you could be matched with via StepUp for Dementia Research include:

• Surveys about what works in improving quality of life for people with dementia and their carers
• Drug and clinical trials
• Longitudinal follow-up studies for people who do not have dementia, but may be at risk based on family history, genetic testing or brain imaging
• Intervention studies, where a behavioural change such as diet, socialising or exercise is introduced and research is conducted on whether this improves outcomes
• Genetic and brain imaging studies to identify risk factors, biomarkers and possible drug targets for dementia

What is ageing research?

Ageing research focuses on broad areas that relate to ageing (e.g. physical, mental, psychological and societal issues) and aged care. Brain health and neurological conditions are one part of this, but ageing research aims to answer many other questions, such as:

• Why do our bodies decline as we grow old?
• Can exercise protect me from age-related disease?
• Is there a gene for determining how long we will live?
• Can the bacteria in our gut support healthy ageing?
• How can we make aged care homes a nicer place to live?
• How can I remain independent for as long as possible?

These are just a few examples, so you could see many other topics if you match with studies through StepUp for Ageing Research. 

The types of studies include, but are not limited to:

• Surveys about what works in improving quality of life for older people, caregiver support or public policy decision making
• Health and aged care services and system
• Drug trials 
• Longitudinal follow-up studies, genetic testing or brain imaging
• Intervention studies, where a behavioural or lifestyle change such as diet, socialising or exercise is introduced and research is conducted on whether this improves outcomes
• Age discrimination, social support or aging and social stress

Why get involved?

Getting involved in research can help so many people, directly and indirectly. Here are just a few of the benefits:

You can read more about why you should sign up on the StepUp for Dementia Research and StepUp for Ageing Research websites. You can sign up on only one of them to participate in either or both research areas.

How it works

The StepUp for Research programs are an easy way to express your interest in participating in research studies. Their software matches participants to research studies based on simple characteristics such as your age, location, or health conditions.

The sign up process only takes 5-15 minutes and can be done online, over the phone, or by mail. They will ask you:

• Your name and age
• Your address
• Some brief questions about your medical history (i.e. if you have been diagnosed with dementia or other conditions)
• What type of research you’re volunteering for (ageing, dementia, or both)

You can sign up for yourself or register someone else as a volunteer (which takes a bit more time). There are also a few additional questions if you are living with dementia. After you have signed up, you can choose to answer more questions about your medical history, which increases your chance of matching to studies.

Registering as a volunteer does not commit you to any studies – it’s just an expression of interest. Choosing to get involved in research is a personal decision. You should discuss the possible advantages and disadvantages of participation with the researcher or your own doctor, nurse, or other health professional.

Other ways to get involved

Signing up as a volunteer via Step Up for Research is just one way to get involved. Here are some of the other ways that you can support research or find research studies.

Brain donation

Many people are registered as organ donors, but did you know you can donate your brain for research? It’s an option that you can discuss with your doctor and your family to see if it’s right for you. Brain donation is open to people living with brain disorders, diseases or injuries, as well as those with typical brain function.

Despite progress in neuro-imaging technology, there is a lot we don’t know about the brain. Studying brain tissue can help researchers improve diagnostic tools, understand the cause of certain disorders, and work towards finding treatments or cures. 

Learn more about brain donation here >

Clinical trial finders

There are a few different websites that can help you find clinical trials. A clinical trial is any research study that involves human participants who volunteer to try a new treatment, allowing researchers to understand how it affects their health.

Some clinical trials are for newly developed pharmaceutical medications, while others might be comparing existing medications. There are also trials which evaluate the effect of dietary or lifestyle changes. This helps researchers determine if an intervention works, whether or not it is effective, and ensure it doesn’t have negative side effects.

Here are a few different websites to get you started:

• Australian Clinical Trials – Government registry of all clinical trials, which can be searched by disease categories.
• Neuroscience Research Australia (NeuRA) – An independent, not-for-profit research institute with information about different research participant opportunities.
• MS Australia Clinical Trials Network – Website about multiple sclerosis trials with resources for patients & researchers.
• Stroke Foundation Clinical Trials – List of clinical trials for stroke.
• Australian Neuromuscular Disease Registry – AUSNMD provides details of clinical trials for multiple neuromuscular conditions at various sites across Australia.

Join patient organisations

Some patient organisations and advocacy groups will share information about research opportunities via their newsletter or website. We do this through Migraine & Headache Australia, which is a division of the Brain Foundation.

If you or a loved one is living with a particular disease, disorder, or injury, you can search for relevant organisations to see if they advertise research studies.

Whether you’re signing up as a study participant or making a donation to fund new research, please know that your contribution is deeply appreciated. Research would not be possible without your help.

References:

1. Australian Institute of Health and Welfare, 2022, Dementia in Australia [Web Report]. Retrieved from: https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/summary 
2. Australian Institute of Health and Welfare, 2022, Older Australians [Web Report]. Retrieved from: https://www.aihw.gov.au/reports/older-people/older-australians/contents/demographic-profile