Research participation

I saw an advertisement for people with dementia to take part in a research project. Should I suggest this for my wife, who has dementia? How should I decide whether or not to give my permission?

  • There is a great deal of vital research on dementia happening in Australia and other countries. Issues being researched include:
    • the causes of dementia
    • possible treatments and therapies to slow or reverse dementia symptoms
    • better ways of diagnosing dementia
    • better ways of providing support for people with dementia and their carers
    • community understanding of dementia
    • dementia risk reduction and prevention.
  • Informed consent is an important part of all research projects. People in the early stage of dementia may make their own decision, but, as the dementia progresses, such decisions may need to be made by their substitute decision-maker.
  • Participation in any research project is entirely voluntary.
  • Being involved in a research project may help the person with dementia and/or their family carers to feel they are making a positive contribution to improving outcomes for people with dementia, or it may provide some sense of social connection, or there may be direct benefits, such as having access to a successful medicine in its trial phase.
  • On the other hand, participation may be stressful or inconvenient, or there may be side-effects in clinical trials of experimental drugs or other therapies – although these are always carefully monitored.
  • The rules about who needs to give consent for a person with dementia to be involved in research vary somewhat among States/Territories, e.g. in some places, the guardianship authority needs to approve participation in clinical trials in people who do not have capacity. In research that doesn’t involve medical intervention, consent may be given by the person’s substitute decision-maker.

A Help Sheet from Dementia Australia – Dementia Research – lists a number of questions that you can ask the researcher to help you decide whether or not to participate. You can download it here.