Well I’ve been spending a lot of time with Dr. Google lately, digging into the drug trials and drug assessments. Seems like the most thorough ones are the ones where government bodies in countries with public health are trying to figure out if the enormous cost of these drugs is worth the money in terms of patient and carer quality of life. (I’m paraphrasing an awful lot of statistics and probabilities and assorted test scales here, most of which I don’t understand very well.)
However, the bottom line (and they mean it!) seems to be that the drugs like donepezil (Aricept) work in terms of improving life for patient and caregiver, at least until the severe stage, but that the deterioration continues underneath the drug treatment of symptoms, so that stopping the drug leads to almost immediate huge setbacks.
Memantine (Trade name Ebixa here in Canada) works to improve mood and maybe function a little tiny bit, (in several studies not even statistically significant) and is considered cost effective. However, the delay to care home placement is measured in weeks or a couple of months. And here I thought we were talking years of stabilization! No miracles here, folks (move along).
Nonetheless these incredibly expensive — and profitable — drugs are cost effective for government systems because even a few months of delay in placement saves thousands of dollars to the health care system.
I THINK, if I read it right, the assessment for the UK also indicated that although these drugs do help somewhat with functionality, they do not affect life expectancy — they slow down the deterioration but do not stop the progression of the disease, which is going on underneath the drug treatment. Most of the trials continue to be of such short term though – 6 months, 24 months – that there really isn’t a lot of info. Also the government assessment is most concerned with delay of placement in care homes, not long term outcome.
Very confusing and of great interest to those of us like me who wonder how long WE can survive our loved ones’ illness.