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“Should I or Shouldn’t I?”
 This is a question that’s often asked when people with early-stage memory loss get
together to talk about participating in a clinical trial or research study. Although it may
sound like an easy question to answer, many people find that they must put a lot of
thought into making the right decision for themselves. And in cases where caregivers are
present, the decision-making process can often become even more complex as different points
of view emerge. In this article, we’ll take a look at some of the issues that are involved in
deciding whether or not to join a clinical trial from the points of view of the person with
early-stage dementia and the caregiver.
First, let’s start by defining what clinical trials and clinical studies are. A clinical trial is a
specific type of study in which one group of volunteers gets an experimental treatment, while
a similar group gets a placebo (an imitation of the experimental treatment). The scientists
running the trial are then able to evaluate the effect of the new treatment by comparing the
results in both groups of volunteers. A clinical study is any medical research project that
involves volunteers.
The Early-Stage Person
One of the biggest concerns in joining a clinical trial for the person with dementia is not
knowing if he will receive the “real treatment” or only be given the placebo. It can be very
frustrating to participate in a trial that requires a long-term commitment when there are no
guarantees about what treatment you will receive. As one support group member stated when
faced with this dilemma, “I would just find it so much easier to keep going if I knew I was
getting the experimental drug. No matter how many times I ask, no one will tell me and
that’s very annoying.” Another issue for the early-stage person to consider is the amount of
time she may be asked to commit to a clinical trial or study. It’s not unusual for a trial to be
conducted over a period of several weeks or months which could become problematic.
Why, then, would an early-stage person want to participate in research? The answer I hear
most often can be summed up in one word – “Hope.” Without study participants,
little or no progress will be made in finding the breakthroughs we are all waiting for in the
treatment or prevention of Alzheimer’s disease and other dementias. By joining a clinical trial
or study, each participant has the opportunity to make a very real contribution that could
benefit not only themselves but others as well.
The Caregiver
Hope also acts as a powerful incentive for caregivers who are weighing the pros and cons
of having the diagnosed person join a clinical trial or study. Even if there is a slight chance
that an experimental drug or treatment may prove to be effective, shouldn’t that chance be
taken? Unfortunately, there is no magic formula for deciding whether a person should
volunteer to participate in a clinical trial but there are some questions you may want to
consider, such as,“What are the risks involved in participating in this study?” “Will any of the
treatment be painful?” “Will we ever be told whether the participant received the placebo or
the experimental treatment?” and “If a participant ends up receiving a placebo the first time
around, will there be an opportunity to receive the experimental treatment?”
While this article only touches on this complex issue, information about participating in a
clinical trial or study is available by calling our Helpline at 1-800-272-3900 or by browsing our website. To learn about some of the studies in our area, see the
N.Y.C.A.R.E. section of this newsletter.
— Paulette Michaud
Director, Early-Stage Services
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