Participating in dementia research

Participating in dementia research can be a rewarding experience. This section outlines advantages and disadvantages of participation in a research study. Please consider these points before signing up to participate.


Advantages of participating

There are a number of advantages of participating in clinical trials and research projects for families, carers and people with dementia. These may include:

  • Helping to combat feelings of helplessness. You may feel that by participating in research you can contribute towards finding a cause, treatment or cure for this disease.
  • Possibly learning more about your own situation.
  • Potentially finding a drug that might prove to be of some help (e.g. improving attention and concentration) if participating in an experimental drug study, even if it is not a ‘cure.’
  • Experiencing improvements while participating in research, even if taking a placebo, possibly reflecting a response to the extra attention and interest in your condition.

Disadvantages of participating

It is important to also note that there may also be disadvantages to participating in a clinical trial or research project, including:

  • Considerable time commitment requirements. Although studies vary in the amount of time involved, many studies require that the person be available for several visits, which may not be convenient.
  • Very stringent criteria regarding the types of participants that are eligible. Some studies may exclude people who have another illness or are taking other medication. It can be disappointing to be turned down for a research project, particularly a drug study.
  • Possible non-medical side effects that might occur as a result of participation. For example, a person who becomes quite agitated by a trip to the supermarket may not be a good candidate for a project, which involves trips to a research facility several times a week.
  • Not knowing whether you are taking the real drug or a placebo, which can be frustrating for some participants.