Frequently Asked Questions about volunteering for dementia research
 

 

On this page we list answers to common questions about volunteering for a research project. If your question is not listed, please email us ...

   

Why do research projects need volunteers?

 

By donating your time, and sharing your experiences and opinions, your contribution may help the search for a cure for dementia, or improve the care and quality of life for others living with dementia while that cure is being found.

   

Do research volunteers get benefits?

 

A project usually cannot promise direct benefits to participants. Some projects can offer to reimburse participants for particular costs, such as transport fares.

Many volunteers value and enjoy opportunities to get involved.

Click on the picture below to view a short video showing the perspective of one family on research participation

 
   

What types of participants are needed for research?

 

Dementia research covers a very broad array of topics, settings, professions, and special groups in society.

Projects interested in preventing dementia and reducing risks may need to recruit persons who currently don't have a diagnosis of dementia.

Projects interested in treatments may require participants with a diagnosis of dementia, memory problems, or other health conditions such as diabetes or history of heart disease.

Projects interested in improving services or educating health professionals may need to recruit at the level of a whole facility or practice (e.g. a nursing home, or a GP's practice in the community) 

   

How do I find a project?

 


To find projects recruiting participants, use our
LINK database (click button on the left). You can also visit the clinical trials page. 

   
If I join a project, what will be involved?
 

Involvement in research can be in a variety of different ways or may involve different methods of collecting important information. A research team will clearly outline this information to you as part of the consent process to take part in a project.

 

DCRC projects typically involve human participants. And some of the research methods involved are:

  • completing a survey or online questionnaire

  • Taking part in an interview or a focus group

  • undergoing psychological, physiological or medical testing or treatment

  • being observed by researchers (e.g. in a nursing home visit)

  • permitting researchers to collect information from your personal medical records

  • providing a sample of body tissue or fluids (e.g. skin, blood, urine, saliva, hair, bones or biopsy specimens)

  • access to your information as part of an existing published or unpublished source or database.

Before you (or someone you are consenting for) can take part in a project, the research team must fully explain the study, including any potential risks and benefits. A researcher will explain what your involvement will entail, and give you a chance to ask questions.

 

 

How do I know if a project is safe?

 

Every project involving DCRC researchers has been approved by an ethics committee. The process of ethical review is rigorous, and involves experts, community leaders, and lay people reviewing a project (before it commences) to examine the potential for harm. The standards for research involving humans in Australia are set by the National Health and Medical Research Council (NH&MRC).

 


To view current Australian national statements on ethical conduct of research involving human participants, click the black button on the left

 

Any potential risk to a participant (no matter how small it may be) must be disclosed fully. Likewise, any possible risk or harm that occured during a project must be documented by the research team, and reported as requried to the ethics committee that approved the study.

   

What if I change my mind after signing up?

 

It is every participant's right to withdraw from a research project.

A decision to 'change your mind' is (and must be by law) fully respected. The information on how to change your mind must form part of a consent form for a research project.

   

Can I volunteer someone else to take part in a project?

 

Research participation requires adherence to range of laws and ethical guidelines. Only under certain and very specific circumstance can a person give consent on behalf of another person - and example is when power of attorney is legally vested in the son, daughter or partner of a vulnerable person (such as a person with dementia in full-time care).

   
  PLEASE REMEMBER: IT'S YOUR CHOICE

You may elect not to participate in a research project
and
You can change your mind later after signing up -
(i.e. you can withdraw at any stage)