The Current

Family places hope in drug trial for hereditary Alzheimer's gene mutation

If you knew you had a 50-50 chance of developing Alzheimer's, would you take a test to find out? It's a real life dilemma for families living with a rare variation of Alzheimer's known as A.D.A.D. The Current looks the efforts to treat this form of the disease.
Alzheimer’s researcher Dr. Randall Bateman (L) hopes the clinical trials of two drugs he is working on will slow, stop or even reverse Alzheimer's. (Washington University School of Medicine)

Read story transcript

Ted has Alzheimer's disease. He's 51-years-old and was diagnosed eight years ago. 

Of course, living with early onset Alzheimer's is difficult for any family.  But that's not all for this family.

Ted tested positive for a rare genetic mutation called autosomal-dominant Alzheimer's disease — or ADAD. Having the mutation means that you will definitely develop Alzheimer's  and often early onset.

It also means that your children have a 50-50 chance of inheriting the mutation — a 50-50 chance of having Alzheimer's in their lives. That's why we're not using this family's last names to make sure their kids don't face genetic discrimination when they apply for insurance, or even for jobs. 

Ted comes from a big family, and the effect of the genetic mutation has been widespread. Three family members have a 50-50 chance of carrying the gene. None of them knows if they do.

The Current's Anna Maria Tremonti spoke with Debbie, Ted's younger sister and Ted's kids, Lindsay and Daniel.

Dr. Randall Bateman, director of the Dominantly Inherited Alzheimer Network Trials Unit at Washington University, has met a lot of families with the rare autosomal dominant Alzheimer's disease mutation. He's the director of the ongoing clinical drug trial Ted is a part of, which involves specifically families with ADAD.   

Dr. Bateman has also been involved in organizing the conferences that bring together ADAD families with researchers, pharmaceutical companies, and other experts in the field.  The second of these will take place in Toronto, in July.

For more information about the Alzheimer's genetic mutation clinical drug trial, including how to get involved if your family has ADAD, here's a link to the DIAN Expanded Registry

This segment was produced by The Current's Karin Marley.