feeling helpless

feelingalone2

My wife was recently diagnosed with early onset dementia probably due to AD. After seeing a Neurologist for 2.5 years, including an inconclusive spinal fluid analysis they now think they can diagnose it as early onset dementia. As I type this, there has been no course of treatment for her prescribed by our Neurologist. He was supposed to ask about Lecanemab for my wife but said due to her MOCA score she did not qualify by the FDA. I am patiently waiting for the approval of Donanemab and hopefully she can take this. I just feel helpless, stressed and sad. I hope someone can offer any advice or encouragement. Would a 2nd opinion be beneficial?

Quilting brings calm

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.

SusanB-dil

Hi feelingalone2 - Welcome to 'here', but sorry for the reason.

I'm sorry you are dealing with that. It does seem odd that there is no course of treatment after such a length of time. Others will weigh in, but I could see where a second opinion would help. Maybe a different neurologist, but I know wait-times can be a while.

SDianeL

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

Iris L.

The treatment is managing the environment and making lifestyle changes to ensure safety and quality of life. Also take care of legal and financial affairs.

Iris

allit

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.

Lgb35

I am sorry you are dealing with all of this. My DH is 60 and I am 54. We are both still working. We have been searching for a diagnosis for over 3 years now. DH has been taking Aricept for 3 years. His CSF was borderline for AD. The doctors are unsure if he has AD or a form of FTD. His current diagnosis is MCI. His MoCa score was not good and his SLUMS score was also not good. We did seek out a second opinion with Cleveland Clinic which is a 4 hour drive. At this point we are wondering where to go from here. DH doesn’t want to make the trip to Cleveland and he doesn’t want to do anymore neuropsychological evaluations because they make him feel stupid.

I am feeling like the only benefit to having an actual diagnosis that is causing his MCI would be for SSDI.

Iris L.

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

​fesk

Feeling alone2,

I am sorry you are going through this. I would seek a second opinion. Perhaps not a neurologist but a geriatric psychiatrist or geriatrician that specializes in this field.

You should be getting better advice, whether it is lifestyle changes or medication (Aricept and Namenda have been beneficial for many people, including my mother).

Hope you get the help you need soon.

GothicGremlin

@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.

Lgb35

https://alzconnected.org/discussion/comment/214076#Comment_214076

he sells commercial building materials and I don’t think he is doing it well.

Iris L.

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

this is a slide on a presentation of lecanemab by a Duke provider. If you want to listen to the presentation it’s on this page https://dukefamilysupport.org/caregiver-connections/

Iris L.

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

Iris

jfkoc

I think Iris is spot on;

The treatment is managing the environment and making lifestyle changes to ensure safety and quality of life. Also take care of legal and financial affairs.