Alzheimer’s caregivers have a very conflicted relationship with medications.
I cannot, offhand, think of another branch of pharmaceutical science where so much uncertainty is stamped with so high a price tag.
Meds for Alzheimer’s is naturally a frequent topic of discussion on my favorite Alz-spouse support forum. Does your spouse use them? Which ones?
How much? Should we quit? Can we afford them? And most often but also most unanswerable: Do they make any difference?
Do they make any difference? That is among the great mysteries of Alzheimer’s.
Let me break it down for you.
If a person with Alzheimer’s uses the commonly prescribed drugs, one of the following will be true:
a) He will (for a time which may be ≤ two years) function at a cognitive level which is higher than what would otherwise be his baseline.
b) There will be no effect. (Apparently, we are told, this is the case for 50%+ of patients!)
Given that particular flow diagram, most of us choose to hedge our bets and buy the drugs. Still, this is not a financial choice we make lightly.
Although one of the major players (Aricept) has become available in generic (cheaper) form, another (Namenda) is still dangled in front of our desperate-for-anything clutches at a premium that helps no one but the patent holder. (Speaking of the ones with which I’m familiar...there are more of course.) And, wherever you stand politically, it is impossible to be so financially beholden to Big Pharma without your mind returning (over and over again) to choices “a” and “b” in the previous paragraph.
What if “b” is the correct response in our case, and we’re shelling out for nothing? Well, that sticks in our craw a bit, since we figure we need the $250/month (give or take your health insurance’s contribution) more than Forest Laboratories, Inc. But within moments of our entertaining the idea of stopping meds (because, after all, they told us it would likely only buy us a very few years of improved function,) we are besieged with second-guessing ourselves. What if it IS still helping and I just can’t tell? (Since, after all, I have no clue what condition he would be in were he not on medication.) What if he’s on the verge of a decline which just happens to correspond with stopping meds? How would I ever know whether my decision was a precipitating factor?
I’m willing to bet that when it comes down to it, most of us who buy the drugs and stick with the drugs do it so that we will never have to deal with the troublesome thought that we didn’t do everything we possibly could have. Every dime spent on medications which are very possibly useless (especially after five years) amounts to premiums paid on an emotional insurance policy.
Now please do not mistake my ramblings for advice. I’m merely describing the muddled state of uncertainty that any caregiving spouse is bound to find him or herself in when it comes to the drug question.
While we can and do compare thoughts and notes on our support forum, everyone knows to take pressing questions to the clinician in charge. As for me, I lean toward withdrawing the regular money infusions we’re making into the pharmaceutical industry. I have discussed it with both Jeff’s neurological NP and the doc in charge of the clinical studies we participated in at NIH. The responses I got threw the ball firmly back into my court.
So, yeah...there I am. Still uncertain, still weighing the maybes and what ifs.