Choosing to participate in familial Alzheimer's disease research
A Youngtimers Guide ・ Last Reviewed Nov 12 2025
If you come from a family affected by familial Alzheimer’s disease (FAD), you’re not just navigating a uniquely challenging genetic reality—you’re also sitting on the front lines of some of the most important Alzheimer’s research happening in the world.
The scientific community has learned more about Alzheimer’s disease in the last 30 years than in the century before it. Much of that is thanks to people with genetic mutations that cause FAD.
FAD families are incredibly valuable to Alzheimer’s research.
Because the progression of FAD is genetically predictable, it gives scientists a rare chance to study how Alzheimer’s develops before symptoms appear. This allows researchers to:
Learn about the fundamental biology that causes the disease
Track brain changes years or decades before diagnosis
Test whether treatments can slow, delay, or prevent disease symptoms
Study Alzheimer’s progression in younger people, who tend to have fewer complicating health issues
FAD research is essential to finding therapies that work—not only for genetic forms of Alzheimer’s, but potentially for all the broader Alzheimer’s community.
The willingness of FAD families to participate in studies, contribute blood and spinal fluid, undergo brain scans, travel for visits, and even take investigational drugs has changed the trajectory of Alzheimer’s research. In fact, nearly all Alzheimer’s drugs currently in development exist because of discoveries made using the mutations FAD families carry.
Should you participate in Alzheimer’s research?
If you’re considering whether or not to participate in research, this guide will help you understand:
Types of Alzheimer’s research
Procedures one can expect in an Alzheimer’s study
Things to consider when deciding whether to participate
Key organizations in familial Alzheimer’s disease research
Specific study and trial opportunities in familial Alzheimer’s disease research
Milestones from past familial Alzheimer’s disease research
Tools, resources, and support as you consider participating in Alzheimer’s research
Ask the Expert Videos: Familial Alzheimer’s Disease Research
