I need advice on a decision. A Clinical Trial that was offered to my 61 year old sister with FTD or start the Aricept?

Just my 2 cents,, my dad took Aricept,, we were told up front it is a crapshoot,, may work, may not, no one can prove either way. Did it help my Dad? who knows. So in many ways I feel like it was sort of a "clinical trial" on its own, and no proof either way for us. My MIL had "dementia",, they gave her Aricept for a few years,, again,, no way to know if it helped or not. So why not try the clinical trial? It may or may not help, she may or may not get the "real drug",, but she for sure will get much more testing and all of it will be covered by the study. ( I work at a major teaching and research hospital and have been active in several trials as a clinician) If it does work,, Hooray! You have helped your sister and possibly many more to come. And most studies are limited in time, so you could always start the Aricept once it is over if you think it will help. Good luck,, this disease has no cure.

My hubby was diagnosed 5 years ago with IgA Nephropathy (also called Berger’s Disease) for which we were told there is no definitive cure for. He was offered a chance in a clinical trial, where you either get a placebo or the actual drug being tested. He would probably be on dialysis within a year so We figured he had nothing to lose. After phase 1, he was showing improvement. Was offered to participate in Phase 2, which he did. By the end of phase 2, I was almost sure he was receiving the “study drug” because all his labs were improved. He has been in remission since that time and I am so thankful we made that decision. He has now been diagnosed with LBD, and as his POA if offered a clinical trial I would say “why not”, because none of the medication he’s taken thus far has helped.
Sorry this response is so long but felt it might help Since we have been there. Prayers for you and whatever decision you make.

Her doctor may have been pushy because trials fill up quickly. Your sister is only 61 and, as long as the rest of her health is good, I think it is worth her participation in the trial. She's already had the misfortune of being diagnosed with FTD and none of the drugs - Aricept included - has been shown to alter the final outcome of the disease. For 18 months at least, she will get excellent care at no cost to her. It is a courageous thing to do being part of a clinical trial but it also comes with a lot of support and information about what is going on with her. If she does it, it will be part of her legacy.

Aricept/Donepezil isn’t known to improve FTD symptoms, from what I understand. In actuality, it may increase behavioral symptoms in some people.

But in any case, what you’re asking is so important that if I were you, I’d seek a second medical opinion.

I worked in a Neurology clinic for years. We saw good results with Aricept. In a clinical trial, she may not be getting the new med but a placebo instead.

So far, that I know of, there is no Alzheimer's drugs that are proven to improve or delay. It is difficult to study them due to huge numbers of patients needed in control group. She would be unlikely to take any meds that can help with symptoms. On the one hand we will never have new drugs if there are not brave individuals willing, on the other hand there will be problems with what drugs she can take, with forms, with blood work. And she may not even be on the next "new answer" to care.
I myself would not do it. But others may feel differently. Does your Mom have any input? Is she aware of her diagnosis? Would she have an opinion. Remember, she is getting a drug in a stage of development that leads them to believe it is safe to study in large numbers, but until it is approved it is still experimental.
Good luck with the decision.

Gee, I'd want a definitive diagnosis before I started anything, and I've always distrusted any pushy sales pitch.

My father took Aricept and my wife currently with major dementia has been on similar meds. They say it slows down the progression, but it is imperceptible. I stopped the dollar drain. I would opt not to give it to them if I had a do over. I recommend the trial. Since dementia is irreversible, we need a cure and the trials are one method seeking just that.

You realize that your sister could get the placebo (sugar pill). How will being on a placebo for what ever period the trial is affect your sister's health?

My hubby who has Alzheimer's tried Aricept. He couldn't sleep, it was like he had too much caffeine. It also gave him diarrhea, he has a problem with diarrhea anyway but this made it 1,000 times worse. He tried it for 3 weeks to see if his body would adjust, finally I told him to just stop it. It just didn't work for him.

As you know, Aricept won't cure dementia. The way I understand it, Aricept just masks symptoms. Personally, if she wants to do the study I would say do the study.