Participating in Alzheimer and Dementia-Related Clinical Studies

Research on Alzheimer’s disease and other dementias is taking place all over the United States. There are two broad categories of research: pharmacological (drug) and non-pharmacological (non-drug). The goal of research is to discover a cure for the disease and to improve treatment options. There is also a focus on research that will help people with Alzheimer’s disease or other dementias experience a better quality of life. Research that examines the impact of being a caregiver to a person with dementia, and how to reduce the stress of caregiving is also being conducted.

On average, it takes thirteen years and billions of dollars from the time research begins on a new treatment to when your doctor can prescribe it. Researchers and scientists always need volunteers to assist with their studies. Research is done in phases, and at a certain point, human subjects are needed to test the experimental drug. Clinical trials are strictly regulated and supervised, and the safety of humans is always the number one concern.

Why should you participate in research?

Why should you consider being a volunteer who participates in a clinical trial? Participating in research and helping to advance science is a noble thing to do. There are other reasons why you might want to get involved:

  • To get early access to a treatment or medication that may benefit you.

  • To help improve treatments for future generations.

  • To help find a cure.

  • To have a greater level of involvement in your medical care.

  • To feel more in control of your condition.

What should you ask?

Before you commit to participating in a clinical trial, you should ask the following questions:

  • What is the purpose of the study?

  • How long will the study last?

  • What is the time commitment?

  • Do I need to bring someone with me to the appointments?

  • What happens if I want to quit the study before it is finished?

  • What are the possible side effects?

  • Will it cost me anything to participate?

  • What if I have questions or concerns?

What is the downside to participating in a clinical trial?

There may be risks associated with participating in a study.

  • It may cost you money in gas or parking fees to travel to the study site. Costs associated with participating in the study may or may not be reimbursed.

  • You may have to bring someone with you to the appointments.

  • The study may require a significant time commitment from both you and your care partner.

  • You may have to undergo several tests and answer a lot of questions about your medical history and condition.

  • You may receive a placebo and not the experimental drug.

  • You may experience unknown side effects.

  • You may not receive any benefit at all to participating.

How do you find out about clinical trials and if you are eligible to participate?

The Alzheimer Association has a service called TrialMatch® which generates lists of clinical trials based on information that you provide about yourself. The service is easy-to-use, and the database currently contains 250 studies being conducted across the country and online.

You may want to also ask your doctor what he or she knows about clinical trials in your area, and check with your local hospital and university. You may or may not be eligible to participate based on the inclusion and exclusion criteria of the various studies.

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