PHILADELPHIA – Donald Jackson, 81, and his partner of more than 40 years, Myrna Roach, 74, are the kind of older people many of us would like to be one day.
Both still work and are energetic enough to travel extensively. They take medicine for high blood pressure and he has diabetes, but they feel healthy. They like to join clinical trials and know from one that their mental abilities have been stable for years.
Still, Roach has a strong family history of Alzheimer's disease. Jackson doesn't, but Alzheimer's is the disease he dreads above all others.
So, it was with a mixture of curiosity, anxiety and altruism that the couple entered an unusual clinical trial at the University of Pennsylvania. Using a PET scan, their brains were examined for deposits of amyloid, one of the hallmark proteins found in dementia.
Then — even though there are currently no treatments that change the course of the disease and even though no one knows for sure how much amyloid deposits raise the risk of getting dementia — they were told the results so that researchers could measure how the news affected them.
Jason Karlawish, a Penn physician who is leading the psychological study, said people often join trials like this because they have seen what Alzheimer's does up close and want to help.
On many levels, this is the stuff of science fiction: If you could know the future, would you want to? If you did, how would you change? Would other people treat you differently?
His study is part of a larger clinical trial known as A4 (short for Anti-Amyloid Treatment in Asymptomatic Alzheimer's) that is testing the anti-amyloid drug solanezumab in people who are at risk for Alzheimer's but don't have symptoms yet. Frustrated that drugs like solanezumab haven't worked in patients who already are sick, doctors want to test in people with less damaged brains.