This week I found a link for the Alzheimer's Association TrialMatch, which helps connect caregivers and Alzheimer's patients with clinical trials. I found several for caregivers, and have already completed one survey. (You have to live near some of the studies, but some can be done online.) It's interesting to see what questions they ask caregivers. The one I did had a Caregiver Strain Index (I had no idea there was such a thing!), a Caregiver Grief Inventory, and a Scale of Perceived Social Support. I don't have a lot of people who want to talk about what is going on at our house, so even something as impersonal as questions on a survey can help me sit down and think seriously about things--something I don't often do. That's one reason I like to do these surveys. The other reason is that it makes me feel like I have at least a very tiny input into what professionals are thinking about the disease. After being a caregiver for so long, I feel like I have a lot of things I'd like to tell somebody!
One interesting thing I found was that at least two of the trials for caregivers involved studying their heart health. I found this especially interesting since I was recently diagnosed with congestive heart failure. Evidently I'm not the first caregiver to suffer adverse effects from years and years of caregiver stress.
Anyway, here is the link for the TrialMatch site, in case anyone else is interested - http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp
My experience with drkug trials - DW was in one shortly after being diagnosed in 2006.
1. Determine the time commitment required to evaluate the subject at each visit.. DW and I spent literally 5-7 hours every 4 weeks undergoing exhaustive metal testing and invasive testing, including spinal taps , We were told several hours and the spinal taps only became part of the protocol after the 3rd or 4th month. If you wanted to remain in the study you had to submit to the taps otherwise you were dropped. Check the environment where the test will take place. I'm aware of other contributors to this site who took their loved Ones to the same Neuro. They can attest to the fact that the office AC temp is set at 65 degrees. For a Floridian.. that's torture!)
The days leading up to the "test day" were filled with anxiety and the days during final months were exhilarating. He ability to respond to all the questions and perform all the test had improved noticeably
2. After a year of testing the net result was DW was one of small group, less that 10%, of the sample population who demonstrated statistically significant improvement is every aspect of the mental testing. She was not only holding her own her test scores had risen by 20%
3. One would think that the BIG PHAM COMPANY would make the drug available to those who benefited from it...WRONG!! NO COMPASSIONATE USE. Big Pham said even though there were minimal adverse side effects it was not commercially viable to continue to manufacture the drug. They would not supply another pill. A world wide search for the drug, pleas to the CEO of the manufacturer, The FDA, Senators, etc. all fruitless. It was impossible to determine who the other participants were (HIPA) There were ~100 others the sample was 1000 patients