Alzheimer’s — would you want to know?

By Michael Dobie, Long Island Newsday, March 14, 2014

Suppose you are a senior citizen and a blood test could predict with near certainty whether you are going to suffer from Alzheimer's disease or some other form of dementia in the next few years.

Would you want to know?

It's been a parlor-game question for years that people have debated hypothetically, with little riding on the answer. Now, suddenly, it's become very real.

A recently developed test measuring fat levels in the bloodstream can predict the imminent onset of dementia symptoms with 90 percent certainty, researchers say.

So, do you want to know?

I come at this both philosophically and personally. My father-in-law had Alzheimer's and suffered a slow but steady decline before he died five years ago. Our family helped and coped as best we could, going from month to month, then week to week, handling each new problem as it arose.

But when it became clear he no longer could live at home as he had been and we started considering the options -- nursing home, assisted living, 24/7 live-in help -- he no longer was capable of contributing to the conversation. So he had no say in his care. And he would have wanted that.

Such decisions can be empowering for a senior with an Alzheimer's diagnosis. But you need the diagnosis. Otherwise, it's easy for families to write off the symptoms as the simple consequences of getting old. She's just a little forgetful. His mind is slipping. And then one day it's gone.

Alana Rosenstein, director of early stage programs at the Long Island Alzheimer's Foundation in Port Washington, says some of her clients would say yes to the blood test. They would be proactive, would want to know so they could have an opportunity, for example, to designate one of their children to take care of their finances but another to make decisions about their medical care.

There is a dark side to knowing, too. And it's compounded by the fact this is a disease currently without a cure.

Tori Cohen, Rosenstein's colleague who runs an in-home program that helps families of Alzheimer's patients, says most of the adult children in her support group would not sign up for the blood test.

"They say if we did that and found out, what would we do with that information?" Cohen said. "Would we seize the day and live differently or would we live the same way? Every time you forget something or things feel different, is it because of that? . . . It is a scary thing."

And it won't get any easier. Our senior population is growing rapidly, nationally and on Long Island. The baby boomers are aging; the number of 65-year-olds in New York jumped by an incredible 30 percent from mid-2011 to mid-2012, with the largest numerical increase in Suffolk County.

More older people means more candidates for the Alzheimer's test, and more people who have to answer the question. And, probably, more services and counseling in place for those who decide to take the test.
I have seen and felt the guilt involved in putting someone in a nursing home, and don't want anyone feeling that on my account. I'd want to plan, to exercise whatever control I could in a situation where so many things eventually will go out of control.

Receiving an Alzheimer's diagnosis, it is said, is like being sent out into the night. I guess I'd like to know that's where I'm going.