How can I help a caregiver who is thinking of putting their loved one in a clinical study?  I was a caregiver, who ‘did’ put my friend in a clinical study, and know the thoughts that go through ones mind. Am I doing the right thing? Suppose it makes him/her worse? I’m playing with someone else’s life, give a pill, don’t give a pill?  

For us having my friend go on a study gave us hope, and not all was lost. That was 1991. My friend is gone now, lived fourteen years after the diagnosis. Did the study work? For a while, I think it did, she was able to wash, and dress herself, attend to her hygiene.

Each month we visited the clinic my friend having blood and cognitive testing done. I was asked questions how she was at home: her eating habits, her hygiene, did I see a difference?

At first we didn’t know if she was getting the real drug because of the double blind study; real drug or placebo? The first study bothered her stomach, so she was taken off it, and put on a different one. This one seemed to help, she was able to read, wash and dress herself. That lasted a few months.

As the years went by I saw no drug helped, and the doctor and I agreed to take her off all medication and let the disease take its course.

That was many years ago and if I had to do it all over again today, I would. First, read everything about the study, what the drugs effects are. Some studies are scans, checking the brains function at different times. From what I have read there are drugs that work hand and hand with others, to help the Alzheimer’s victim. New things are happening everyday, new beginnings for slowing the disease, and maybe one day stopping it.

If you have questions, I will be glad to help in anyway I can.

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