feeling helpless

I don’t think a second opinion would be useful. There really isn’t that much available in the way of treatment - especially for women as the newer IV drugs aren’t that beneficial for them. There are side affects too including brain bleeds and brain swelling. Even the tablets that supposedly mask symptoms aren’t all that useful for many patients. If your doctor did the due diligence to rule out things like b12 vitamin levels and thyroid issues, then he’s done the normal checks.

Welcome to the forums. You will find lots of support and information here. You will also find a post with lots of good tips for new caregivers in a group here for new caregivers. Make sure you get the legal and financial documents recommended to make things easier as time goes on.

there was no course of treatment for my DH. He didn’t have early onset. The Neurologist prescribed Memantine but I didn’t notice a difference. Other than clinical trials sadly there is no treatment. Such a heartbreaking & terrifying disease. Learn all you can & come here for support

my wife, 65 years old, was diagnosed with MCI. after that diagnosis they offered to do LP which she elected to do. the ratios that came back were both marked as "abnormal" so the diagnosis became MCI with Alzheimer's pathology. they then offered her donepezil to try to help with some symptoms - she had a continuous headache with that even though she said she felt like she could remember some things better. so because of the headache they told her to it and her headache got better. they then started rivastigmine capsules and she initially had some dizziness and light sensitivity with that but seems to have resolved for now - but she needs to increase the dose every two weeks until she gets to the target dose. along with those meds, they offered lecanemab - i don't remember seeing in her records where they did MOCA but i did see MMSE. they submitted their plan to the insurance and the insurance wouldn't accept it yet. they want her to have a PET scan. so she's scheduled for a PET scan in August.

all that to say, i'm not sure if a second opinion would be helpful for your wife or not. there's one person in our support group who has been getting infusions for a year and they have considered it helpful. but, the info on it out there so far does not make it sound like it's any kind of miracle option. the amyloid levels might normalize but that doesn't necessarily translate into a huge impact on the course of the disease. donanemab is basically in the same class of therapy. we asked our neurologist about it and they said they aren't excited about it because it seemed to have the same side effects as lecanemab only the percentages were higher.

Lgb, I wonder what type of work DH has been doing for three years with a diagnosis of MCI and being on Aricept. I have a diagnosis of cognitive impairment nos and I've been on Exelon patch, there is no employment that I could do. I was a professional in my career.

Iris

@feelingalone2

I don't know if a second opinion would help or not, but getting a prescription for Aricept and/or Namenda may help. My sister also had early onset, and she told me several times that the drugs helped her to feel more "clear". Of course after a time, the benefits of the drugs fade.

@allit and @Lgb35

My sister's doctor ordered a PET scan for her as well. It was useful in that it helped them diagnose her with early onset Alzheimer's as well as FTD.

Lgb, you wonder where to go from here? If your DH is employed try to take a look at his annual employee review for warnings of poor performance. If he is self employed how is he handling his finances? The next step would be to get legal and financial affairs in order. This would mean delegating a POA for medical and for financial affairs. Also retiring from work in a timely manner. PWDs are at risk for bring fired for poor performance or sued for bad decisions.

After three years on Aricept, has he been stable or has he declined? This is something that the neurologist should be able to tell you. All of the dementias are progressive, meaning that they all get worse, but no one can say how fast The decline will occur. You and he need to prepare yourselves. But if he has anosognosia, he will not be of much help in preparation for the future.

Iris

Allit, thank you for posting a link to these informative webinars. Also for introducing me to the Fazeka score in regards to MRI.

Iris