I’ve just joined a research study for dementia involving statins. It all began with an ad on Facebook which piqued my interest because I’m old and have known several friends and relatives with the disease. Even my husband had a mild case of dementia before his death in 2012.
The study is funded by NIH and came to me via UF Health in Jacksonville. Since I am a good distance away, I will participate virtually, no need for blood tests, since they are not concerned with lipids, and no need for physical appointments.
I began with a long phone call (40 minutes) at 10 A.M. and an email providing a lengthy consent form. Renae (from Jax) recorded my personal information such as health history, social security and medicare numbers, and puzzling to me two trusted people’s addresses and phone numbers. I provided those of my daughter and granddaughter. I thought about this and decided they were contacts in case I kicked the bucket before my 2nd test. And Renae remained on the phone while I read and signed the consent form. In it I found I could read about the study at preventabletrial.org. She promised to send me a printed copy of the form and told me I would soon receive the statin (or placebo) through the mail plus a check for $75, a surprise to me.
Then, she made a phone appointment for me at 3 P.M. on the same day for my baseline test which occurred right on time. The caller first made sure I was in a quiet space where I would not be disturbed, that I
had no computer open or paper and pencil handy. For twenty minutes he asked me memory questions such as today’s date, my age, who is the president, vice-president, count backward from 20, subtract 7 starting with 100, word opposites, etc. etc… And then the difficult one for me, remembering a list of words. Of course, there was no pass/fail, but I already know I am no good at that. I found it all very interesting.
At the end, he, too, informed me that my statin (or placebo) would be mailed and to start taking it right away. And in one year I would receive another phone call to take the same test, which apparently is how they will be able to tell if statins have an impact on dementia. The study is for 75-80 year olds with no history of heart disease or dementia. Of course, I can opt out of the study at any time for any reason.
I’ve never been in a research study before so this is all new to me, and I’m sharing this little bit of information, not to endorse it, but because I thought how a virtual study is done might be interesting to others. I feel good about being a part of something that could help others in the future especially those with dementia and their caregivers. And I should say that I asked my primary care doctor’s opinion before I joined the study. She was wholly in favor of it.
