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Why participate in dementia research?

If you’re affected by dementia, there are good reasons to take part in research studies. But you don’t have to: it’s always your choice.

You might join a research study to feel you‘re:

  • contributing to the search for the cause, treatment and cure for dementia
  • learning more about your own situation
  • potentially finding a drug that might prove to be of some help, even if it isn’t a cure.
  • getting something from participating in research, even if it’s just a placebo, or the feeling that you’re drawing attention to your condition.

You might not join a research study because:

  • many studies require you to be available for several visits, which may not be convenient
  • some studies exclude people who have another illness or are taking other medication, and it can be disappointing to be turned down for a research project
  • taking part in a medication study involves the risks of side effects
  • not knowing if you’re taking the real drug or a placebo can be frustrating.

Questions to ask the researchers

Before you participate, ask the researchers:

  • what is the main purpose of the research or clinical trial?
  • where will the study happen? Will it take place in your home or at a hospital?
  • how long will the study last? Several months or even years?
  • how often and at what time will the appointments be, and how much time is required for each one?
  • can appointments be changed at short notice?
  • will you be separated from your carer during the appointments?
  • how do you get to the research centre? At what cost?
  • what happens if you can’t finish the study?
  • who will have access to the information from the study?
  • is your information confidential?
  • can you continue to see your GP while you’re participating in the study?
  • can you keep taking medications prescribed by doctor during the study?
  • how will your safety be monitored?
  • has the study received approval from the appropriate Ethics Committee?

If you’re participating in a drug trial, ask:

  • is it important to take drugs at a set time? Does the researcher need to be told if this does not happen?
  • how will the drugs be administered?
  • will drugs be difficult to swallow?
  • is there a possibility that your cognitive ability will get worse as a result of the trial?
  • what are the potential risks, benefits and side effects of the drug? (Remember to ask about side effects, like incontinence, sleep disturbances and irritability).
  • what other tests or assessment will be undertaken prior to or during the trials?
  • who should family members call if you have side effects?
  • what are the alternative treatments besides the one being tested in the trial?

Your rights as a participant

  • That the research project will be carried out in a manner conforming to the The Australian clinical trial handbook and the appropriate Ethics Committee guidelines.
  • To be fully informed about all the procedures involved in the research and the possible associated risks, discomforts, side effects and inconveniences.
  • To have all identifying information about you kept confidential, unless they have agreed otherwise.
  • That consent is voluntary and you may withdraw at any time, without having to give an explanation, or refuse to take part in a particular aspect of the research.
  • Not to have future treatment by that doctor or hospital jeopardised by such withdrawal.

In the video below, Annette Moxey, Manager of the Dementia Australia Research Foundation, guides you through:

  • the benefits of participating in research 
  • the different types of study
  • how to find and volunteer for studies
  • what to consider before you sign up.
Dementia expert webinar: clinical trials and research opportunities, with Dr Annette Moxey

Ready to participate? Browse our list of current studies to find one that suits you.

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Last updated
22 November 2023