I have reported elsewhere on my involvement in a research project involving those who have a history of dementia in their family, and who have inherited a gene which is associated with dementia.
I fell into both those categories when examined in the Glasgow Memory Clinic in 2018, and was put on to a world-wide 8 year research project where we were given either a placebo, a low-dosage, or an expected dosage of a drug being investigated by the manufacturer/sponsor of the project.
No-one, except the manufacturer, knew who was on which treatment regime, so we did not know what to expect, from the mental tests which were carried-out on my grey matter on a very regular basis. This was accompanied by continuing thorough investigations into my medical condition, for which I was very thankful. I was treated as a healthy volunteer, which was encouraging.
I had enquired about what would happen if there was a finding world wide that those who had been anonymously on the ‘expected-dosage’ regime, were showing measurable improvement in their mental capacity. Since my investigating doctors did not know what my ‘regime’ was, they could not use their local findings to predict what was or was not likely to occur in my specific case.
Then came the phone call to call-back one of the research doctors, whom I knew well. ‘Cease medication’ was what I was told. Having trained in physics, I always had an enquiring mind, and immediately asked for the reason. I will, of course, have a full medical checkup in the near future, and will at that time have further access to the reasoning. Sufficient to say that it appears that an adverse effect had been noticed world wide in those who had been on the full-dosage regime, so all further supplies of the drugs, tests, and assessments were ceasing.
I may or may not be informed of my particular scenario, and any results they may have noticed in my cerebral responses over the time I was involved.
Whatever happens, I am disapponted that the pharmaceutical company, like several others would seem to have gone up a blind alley in the theory of dementia, or that the medication needs to be re-worked. I am also sorry for those on the project who have shown a marked decline in ability, and have been the reason for the cessation of the project. Finally I am sorry from a personal point of view, in that I felt that I was helping in some small way, to repay the pharmaceutical chemists who have helped keep my family as fit and healthy as they have been.
Should any other useful comments emerge, J will of course, pass them on.
Would I rejoin a similar project? Most certainly! If we are not prepared to make an effort to improve the lot of those who may end up with this kind of distressing condition, what kind of humans are we?