Anne Kolesar’s father, aunt and grandmother all had dementia before they died — a knowledge that shakes her as she contemplates her future at age 61.
The Indiana, Pa., hospice volunteer has no signs of Alzheimer’s disease and no way of knowing if she’ll get it, but she’s aware that she carries a gene that increases her risk. It means she spends more time than her peers thinking about the disease, and she’s joined a national registry of healthy people willing to be studied long term in trials aimed at preventing Alzheimer’s.
Kolesar and her sister “inspect ourselves minutely to make sure that we haven’t got it yet. I know that’s the way all children of all Alzheimer’s sufferers are — you’re just waiting for it to hit.”
Kolesar, who is married and has an adult son, supports a growing trend in Alzheimer’s research, which until now has been dominated by studies of people already diagnosed with some level of the disease that gradually and devastatingly robs them of their memory and cognitive function.
So little has come of efforts to undo those effects in drug trials that more money and emphasis is being put into lengthy monitoring of adults without any dementia symptoms, to see if drugs can postpone their getting the disease or even prevent it. For such studies to be practical and cost-effective, researchers need participants who, like Kolesar, are known to be at higher risk than the general population.
The primary risk factor for Alzheimer’s is age, with an estimated 5 million Americans over age 65 carrying the disease. Kolesar knows from participation in a prior study in New York, however, that she inherited a gene known as ApoE4, which increases her risk by about fourfold.
That makes her a relatively valuable person among some 20,000 nationally who have signed up for the Alzheimer’s Prevention Registry since its creation in May 2012. The Banner Alzheimer’s Institute, based in Phoenix, coordinates the registry, hoping ultimately to create a list of 250,000 people making themselves available for study by researchers across the nation.