Advice

saundersss47

My husband was diagnosed with early stage Alzheimer’s three weeks ago. His doctor has recommended the leqembi treatment. I’ve read all of the risks and comments on this site. My problem is, do I tell my husband the risks and scare him even more or do I make the decision for him, knowing that he would want to try even with the risks. Thoughts or suggestions?

Timmyd

These are just my thoughts. They are worth what you paid for them🙂

When my DW was diagnosed with EO, it was important to me that she have as much agency as possible for as long as possible. She was allowed to make her own decisions for as long as it appeared she understood the situation. People with ALZ are still people and they should be allowed to make decisions as to what they like, dislike, want or don't want for as long as is reasonably possible. So I would approach it the same as if it was any other proposed treatment for a serious medical condition. If this was cancer or ALS, would you want to make treatment decisions for him? Do you think he is capable of understanding the treatment the same way that you understand it?

saundersss47

Thanks for your advice. I don’t think he totally understands the severity of the disease. We talk about what will happen as it progresses and he can’t seem to grasp that it’s more than losing his memory. I’m thinking I will have his doctor explain the possible side effects.

blacksparky

I totally agree with Timmyd. When my DW was diagnosed with EOAD, I let her make the decision along with my input. After reading through all the pros and cons, she decided to not take any of the pharmaceuticals suggested by her Neurologist. That was two years ago and today she isn’t able to make those decisions, but I am still honoring her decisions made then. All she takes now is Zoloft for anxiety and 2000 IU’s of vitamin E. She is currently at late stage 5 / early stage 6 now.

JJ401

My thought is that if you know what he would decide if he wasn’t afflicted by this, make the decision.

DH here is on Kisunla (similar treatment, similar risks). Neurologist when proposing the drug went over the risks to both of us. First step was an MRI. Neurologist called with results. Both of us were on phone. At the end, neurologist asked if he wanted to proceed. DH said yes. Neurologist said we’d hear from the drug company (Lily)

Lily called. They went over all the risks again. DH listened. They asked if he consented to the treatment. DH said yes.

Cue day of first treatment. DH remembers none of this. He asks where we are going and why. I just said it was a new drug given by infusion, not pill, and the doctor recommended it.

DH listened. DH said yes. Do I think he understood the risks? No. He forgot them soon after he was told.
Do I think he would have wanted it if he understood? Absolutely.
So basically, I ended up making the decision.

Timmyd

https://alzconnected.org/discussion/comment/240421#Comment_240421

I would like to extend my sincere appreciation for you and your DH for this decision. Without people willing to try the new medications, there would be no advancement in the pharmaceutical treatment of this disease.

We we received our diagnosis, my DW was quite young and we took interest in clinical trials. I learned in some of these trials, there can be up to 50% of participants who are unknowingly on placebo and subject to the same regiment of testing as those taking the trial medication. This often involves blood draws, MRIs, as well as rigorous cognitive testing. God bless those people who endure this. They are my heroes.

Lgb35

my DH with possible EOAD is early in the process. He feels like he is becoming a burden and worries about what is down the road. He is willing to try anything if it helps slow progression. I don’t think the risks would stop him from taking it.

LearningCurve

https://alzconnected.org/discussion/comment/240419#Comment_240419

Hi. New here. Does he seem to get that he Has this disease? I ask because I'm not sure my DH understands the seriousness of his early stage. I have not endeavored to drive the point home. IDK. I have so much to learn myself.

Iris L.

The majority of PWDs exhibit anosognosia, which means that they are unaware of having dementia and unaware of the implications of having dementia. No matter how much you explain they won't get it, and you will only get them upset. This is not denial, anosognosia is a characteristic of dementia.

Iris

saundersss47

UPDATE…My husband is having a spinal tap in the morning. I couldn’t let him go through that without being honest with him, so after lots of prayers and talking to our kids, I decided I really did need him to know the risks of Leqembi and be able to decide for himself if he wanted to proceed with the treatment. It was a tough conversation, I read the entire pamphlet to him and he asked questions that I was able to answer. He doesn’t like the risks, but as I knew he would, he still wants to try it. Thanks for all of the advice. I am new to this site as we are only three weeks into this. I have learned so much and I am sure I will have more questions as we continue on this journey. Thanks again!

saundersss47

https://alzconnected.org/discussion/comment/240507#Comment_240507

I truly don’t think he fully understands what is ahead. He just thinks his memory will get worse.

LearningCurve

https://alzconnected.org/discussion/comment/240512#Comment_240512

Thank you. Well said. Your info helps!

Bridge4

This is a good example of where you just have to do your best for your PWD in the moment, but remain flexible. In this crazy world there are frequently no right or wrong answers, just best efforts. So often I have tried to respect my DW’s personal agency by ensuring her awareness and desires were included in our decision process. But then you find they have no recollection of providing input or even being told at all about an action, and they will frustrate you even more by angrily demanding a 180-degree change in direction. As you start down the Leqembi road you may find that frequent visits to the infusion center, MRIs, blood draws, or side effects may dramatically change your DH’s desire to proceed. Stay flexible, and don’t regret trying to do what’s best for them, even when they don’t appreciate it.

Russinator

https://alzconnected.org/discussion/comment/240410#Comment_240410

Very well put. I feel the exact same way about it.