ATLANTA (AP) -- People who learn through genetic testing that they have a higher than average risk for Alzheimer's disease are able to handle the bad news pretty well, results from the first major study of this suggest.
The findings aren't enough evidence for doctors to urge more people to get genetic testing, said lead author, Dr. Robert Green. But they challenge assumptions that people will be devastated by a positive test result and misread it as certain proof they're doomed to Alzheimer's.
"Our participants were able to understand the risk and manage it," said Green, a researcher at the Boston University School of Medicine.
For many who learned they were not at increased risk, testing wound up being a great relief.
The study is being published Thursday in the New England Journal of Medicine.
i think it took a brave group of persons to want to know if they are genetically inclined to get this disease. prepared yes but still it would be hard to know in early years. hopefully a cure will be around the bend in the near future so this wont need to be an issue?. divvi
Hopefully, the results of these tests will not be available for insurance companies, potential employers, etc. I can't imagine insurance companies would want to issue policies for someone who "might" get Alzheimer's or some type of dementia.
Sandi, that is why I did not go thru the testing when my Dad died from AD. My mother was begging all of us to test, my brother tested(he is independantly wealthy and at the time did not care about the insurance) well, he is now being treated for serious clinical depression. My sister and I could not afford to have our insurance company drop us or label us as "pre existing" so we declined the testing.
My two sons are part of a research program at UCLA for adult children of known EOAD patients. They were not told the results of the genetic tests. They will be tested every five years until closer to the age of my DH's age of diagnosis (43), then every year or so. The Doctor asked if they were interested in a drug trial for prevention if it ever came up. Something to think about for them.
I had a phone conversation this week with DH's clinical psychologist. I asked about an upcoming presentation at the Museum of Natural Science (Houston) in which our Neurologist would present a program entitled "Update on Alzheimer's Disease". I asked what "updates" would be presented. She couldn't give a complete analysis, but she said it will be a power packed presentation. I was told, the most significant advances are in the EARLY diagnosis of the disease and advances in medication that could slow its progression in the earliest stages - which are often 5 years before most of us got a definitive diagnosis. The only problem I see is that those who would most benefit from this will not be there...and for us, it would be too late coming.