Things to consider about participating in Alzheimer's research

A Youngtimers Guide ・ Last Reviewed Nov 12 2025

Joining a clinical trial is a big commitment. It may affect your personal, emotional, physical, and financial life in ways you haven’t considered.

Participating in Alzheimer’s research means confronting the disease head-on. It can can make the disease feel more real and more personal, especially when learning your genetic status, taking cognitive tests, or undergoing brain imaging. Your family or employers may also be impacted by your participation in research.

Before you agree to participate in a study, here are some things you should know and questions you might want to ask.

• Research requires voluntary consent. You should be given adequate information and time to understand the study, including what it involves, what are the benefits and the risks, etc. You should never feel pressured to join a study. Research is always completely voluntary. 

  • The US Department of Health and Human Services (HHS) has compiled a list of FAQs about informed consent ⧉.

• Research must have scientific merit. Before a study on humans is allowed to be carried out, it must undergo a thorough review from experts in the field. The team must prove that the study will provide new and important knowledge to the field. Once a study is approved, your contribution will help researchers answer important questions about a treatment or disease. You might ask:

  • What does this study aim to learn?

• The benefits of being in research outweigh the risks. Before a study recruits human subjects, the researchers have to show that they have examined all possible benefits and risks for participants. For example, that the treatment has enough benefits (like improving disease outcomes) to weigh the potential side effects it may cause. You might ask:

  • What will participation require from me?

    • What amount of travel will be expected? Where will I need to travel to, and how long will I be gone?

      • Many studies require yearly or biannual in-person evaluations, which can sometimes mean flying to another city and staying for 3-5 days.

    • How much time will I need to commit, and for how long?

    • What portions (if any) can be done at home? In some studies, nurses may visit you to administer injections or collect samples.

  • Will I need to delay having kids? Some studies require that you not get pregnant or breastfeed while enrolled.

  • Do I need to know my genetic status in order to participate? If not, will I need to learn my genetic status at some point?

  • What chance will I receive a treatment or placebo?

  • What are the known risks and side effects? You could have reactions to the an experimental drug, feel sore after tests, or experience fatigue from the logistics alone.

  • Will I receive any results?

  • What kind of support (emotional, logistical, financial) is offered?

• Participants are able to terminate their participation in the research at any time. If your circumstances change and participating in the study becomes too difficult for you, you can stop at any time. It’s important to think through potential circumstances before enrolling. Terminating study participation early means researchers lose important data. You might ask:

  • What happens if I drop out early?

Learn more about participating in research with these articles:

• FAQs about Participating in Alzheimer’s Research ⧉ from UCSF

• Questions to Ask about Volunteering for a Research Study ⧉ from the US Department of Health and Human Services (HHS)

Ask the Expert Videos: Familial Alzheimer’s Disease Research