Alzheimer’s is a worldwide disease, and the Dominantly Inherited Alzheimer’s Network (DIAN) is focused on familial Alzheimer’s that typically affects people in their thirties, forties, or fifties. The Alzheimer’s Association awarded a $4.2 million research grant to study this form of young onset Alzheimer’s.
Studying hereditary Alzheimer’s can speed up discovery of effective treatments, or hopefully, prevention. Although inherited Alzheimer’s is rare, it is the only truly predictable form of the disease. When a parent has the genetic mutation that causes hereditary Alzheimer’s, children have a 50/50 chance of developing the disease. Genetic testing can determine whether a person will develop inherited Alzheimer's.
The Alzheimer’s grant will be used to conduct experimental drug therapies internationally. The participants will be those who are destined to develop Alzheimer’s, but do not exhibit symptoms. The hope is to develop therapies that prevent the disease from happening.
The eleven groups that make up the DIAN network are following 150 participants with familial Alzheimer’s. Researchers have discovered that measurable brain changes can appear as much as 20 years before symptoms. Randy Bateman, MD, and associate professor of Neurology at Washington University School of Medicine, St. Louis, Missouri, explained the importance of a network of research facilities. “No single research center has sufficient numbers of people with dominantly inherited Alzheimer’s to conduct a large enough study to generate meaningful data.”
I met Randy in Washington DC several years ago when he attended the Alzheimer’s Action Summit and joined our Missouri group of advocates to visit our senators. Randy was definitely an asset to our group. We had our own researcher to share first-hand knowledge about treatments coming down the pipeline.
Although the genetic form of Alzheimer’s affects only 1% of people with the disease, the ability to study this group before onset gives a sliver of hope to all people with Alzheimer’s. Anything that will speed up the time it takes for Alzheimer’s disease therapy to become available to the public is good news.
Life is truly heartbreaking for those families dealing with familial Alzheimer’s. Even the ones who escape the disease through genetic roulette may have a parent, aunts and uncles, cousins, or siblings who develop the disease. Sometimes the ones who do not develop the disease spend a lifetime caring for their relatives who do.
I recently received an email from Jessica whose husband tested positive for familial Alzheimer’s. He has not yet developed the disease, but she is already worried about him and her children’s future. The emotional turmoil of that family is immeasurable.
My friend Karen took loving care of her husband Mike throughout his battle with inherited Alzheimer’s. He passed away in February, and now she is at loose ends. “I thought I was ready, but it really hit me hard,” she said. Yes, Karen, I know exactly how you feel. I don’t think we can ever be ready to let go. Caregiving becomes such a part of life that we adapt to the new reality and that becomes our way to put love into action.
Kudos to the Alzheimer’s Association for providing research dollars to study this heartbreaking disease. My sincere wish is that Randy and his cohorts will be able to use this research to find a way to prevent Jessica’s or Karen’s children from developing inherited Alzheimer’s.
Copyright © March 2012 L.S. Fisher