Slowing progression of disease

jehjeh · May 27

I keep hearing that there are meds that can slow the progression of this disease but I wonder if that's only for those who are diagnosed early? At this point, I wouldn't want to have my DH stuck in this stage any longer than necessary. The anxiety, confusion, anger... if doctor recommends one of these new meds is it ok for me to say no? Why would anyone want to prolong the inevitable outcome?

Your thoughts?

Gator1976 · May 27

yes as long as you are his legal Surrogate.

dayn2nite2 · May 27

Just say no. There is nothing that will "slow progression" and the disease will continue to march on. You might get a few months of stability in the current stage - but you are correct, who would wish that for their LO? Nobody.

MaryMN · May 27

Yes, the new meds such as Leqembi and Kisunla, are only for use in the early stages of Alzheimer's. It would not be prescribed for somebody who is further along on the path.

Biggles · May 27

I am getting up the courage to sign the ‘DO NOT REVIVE’ document (here it n Australia) when I visit the doctor next week. It’s a horrible thought but living with this disease is a no win situation. My darling DH of 45 years.

Pat6177 · May 28

is your DH already on Donepezil (brand name Aricept) and memantine (Namenda)? These 2 different medications have been around for a long time. They are pills so you wouldn’t have the risks that come with infusions. There are side effects though most of the side effects are not as severe as the side effects from the newest meds that can cause brain bleeds.

SDianeL · May 28

the infusion meds are for early onset. There is no way to determine if they slow progression since everyone progresses differently. The most you could hope for would be a few months. I would not want to delay the inevitable. My husband was on Memantine. The Neurologist said it might help his concentration. I saw no difference but kept him on it because he had no side effects from it. If you are able to make health decisions on his behalf you can say no to any and all treatment. I stopped specialist visits and any treatment that wasn’t necessary for my DH’s comfort. It’s a difficult decision. Someone on this forum advised to “play it all the way out” when you have difficult decisions. What’s the outcome and what would your LO want? 💜

charley0419 · May 28

https://alzconnected.org/discussion/comment/244254#Comment_244254

my wife on both those meds about 7 months, her progression seems slower but who really knows, I guess it’s the hope it’s working that lets me continue giving to her , hope is all we have

bjt84 · May 28

https://alzconnected.org/discussion/73144/slowing-progression-of-disease

As others have noted, the infusions only slow progression for a few months for people in early, mild stage. This apparently occurs with only approx 50% of cases. MRIs are done after each infusion to ascertain micro-bleeds or not. The bleeds may occur as the drugs remove plaque. There are unique risks/side effects for those with e4/e4 gene allele.

Someone here stated, why prolong this? Everyone should consider that before initiating the infusion regime.

harshedbuzz · May 28

@jehjeh

Assuming you have a medical DPOA/AHD for your DH, you always have the right to say no. With both my dad who had dementia and my mom who at this point doesn't, I always ask doctors "and what happens if we do nothing?"

It's not only OK to say no, sometimes it the wiser and kinder course of action.

The reality is that it is kind of a misunderstanding than these drugs slow progression. The oral meds seem to improve day-to-day function in some people who are able to tolerate them without unpleasant side effects. The disease continues to progress organically in destroying the brain. The infusions are only indicated for those in the MCI/earliest stages (not necessarily "onset" which refers to the young age at first symptoms) of Alzheimer's specifically. It is not approved for those with other kind of dementia including vascular, LB or FTD. The infusions seem to stall symptoms in these earlier stages for an average of about 8 months; they don't seem to be as effective in older people, women or people of color.

HB

tboard · May 28

https://alzconnected.org/discussion/73144/slowing-progression-of-disease

My husband was diagnosed in a mid stage and is being given a drug to slow progression. The idea seemed cruel to me at first. Why prolong a fatal disease? I guess I am not sure what would happen if he progressed faster. Maybe the agitation would become worse? Who knows. I just want you to know that I totally understand your take on this. I think it is always OK to say no to drugs.

psg712 · May 28

You know him best, and you are his advocate. It is always ok to decline a therapy that you judge to be more harmful than helpful, or even simply not useful in his situation.

Slowing progression of disease

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