Dementia has two faces: the clinical and the personal. Researchers and physicians work constantly to try to track down the causative factors in dementia, particularly Alzheimer’s disease, because as we live longer, the numbers afflicted go up. According to the Alzheimer’s Association, more than half of all Americans know someone with Alzheimer’s, and almost 30 percent of them have a family member with the disease.
Because of the influx of 76 million Baby Boomers into their later years, the cost of Alzheimer’s to society is expected to exceed $20 trillion between now and 2050. At a recent research update held by the Alzheimer’s Association, the two faces of Alzheimer’s were presented by Dr. John Morris, director of the Charles F. and Joanne Knight Alzheimer’s Disease Research Center, and Dr. Gary Reiswig, author of The Thousand Mile Stare, and family member of a unique subset of early-onset familial Alzheimer’s.
Reiswig’s family is one of 200 worldwide with single-gene early-onset disease. With this particular gene, people who have it have a 100 percent chance of developing early onset Alzheimer’s, usually in their 50s or earlier. Studying them may lead to some breakthroughs.
An organization studying these families, DIAN (Dominantly Inherited Alzheimer’s Disease), is funded by a multiple-year research grant from the National Institute on Aging. Dr. John C. Morris is the project’s principal investigator.
The DIAN study looks at the children of parents with early onset Alzheimer’s. The siblings are tested; those without the gene serve as controls. Those with the gene will get treatment at a much earlier stage, before symptoms appear. None of the siblings will know if they carry the gene or not. That makes it a true double-blind study.
In an earlier conversation with Dr. Morris, he said that current thinking about the disease is that by the time symptoms are present, it may be too late for a single drug to have any meaningful benefit. “We believe amyloid beta protein is a significant factor, but it may have a lesser effect,’ he explains. To get any meaningful benefit may require combining different drugs with different targets. The research we are doing at Washington University indicates that the symptomatic phase is an end phase in a process that begins years or even decades earlier.”
So with the burden of Alzheimer’s disease on a family, even for those who develop it later in life, should they get tested? Researchers stress the importance of individuals having counseling first, because genetic testing can affect health insurance, life insurance, ability to buy long-term care insurance, ability to drive, and even employability, especially in the absence of an effective preventive treatment. The main advantage for testing and knowing—especially for early-onset disease—lies in family planning for future generations.
Even in the wake of several failed trials for Alzheimer’s treatments, researchers are very hopeful that some of the other treatments in the pipeline will have the desired effect. Morris says the possible reasons for failed trials include: ineffective drugs, or the intervention was off in timing for the disease process. The Alzheimer’s Association has a program called TrialMatch for patients diagnosed with the disease. There are currently about 100 promising treatments in clinical trials. Call 1-800-272-3900 or visit alz.org/trialmatch to see which specific trial, if any, can be a match for your loved one. LN