🎵 "Don't Stop Believin'" – EOA The Alzheimer's Infusions: Hope, Hype & Hard Decisions (Journey)
3 years ago, if someone asked me if there was a treatment that could slow Alzheimer's disease...
The answer would have been:
"No."
Today...(2026)
The answer is a little more complicated.
There are treatments that may slow the progression of Alzheimer's for some people.
They're exciting.
They're controversial.
They're expensive.
They're not for everyone.
And they come with real risks.
If you've heard names like Leqembi or Kisunla, this post is for you.
🧠First Things First...("I'm a realist")
These medications are not a cure.
They do not reverse Alzheimer's.
They do not restore lost memories.
They do not stop the disease.
What they may do is slow the rate of decline in carefully selected patients with early Alzheimer's disease.
For many families, that means the possibility of preserving independence for a little longer.
And when you're living this disease...
Even a little longer matters.
đź’‰ Who Is Eligible?
These medications are generally intended for people who have:
âś” Mild Cognitive Impairment (MCI) due to Alzheimer's disease
or (Stage 2-3 and sadly most don't even have a DX at this time)
âś” Mild Alzheimer's dementia
They are not intended for people in the moderate or advanced stages of Alzheimer's.
Before treatment, most patients will need:
A neurologist or memory specialist
Confirmation that Alzheimer's disease is causing the symptoms (often through an amyloid PET scan or spinal fluid testing)
Brain MRI scans
Medical screening to determine whether the treatment is appropriate
đź’Š Leqembi (Lecanemab)
Leqembi was the first traditional FDA-approved anti-amyloid antibody shown to slow clinical decline in early Alzheimer's disease.
How is it given?
Originally as an IV infusion every two weeks.
More recently, the FDA approved a subcutaneous (under-the-skin) starting regimen that can be administered at home after appropriate evaluation, expanding treatment options for eligible patients.
Potential Benefits
Clinical trials showed a modest slowing of cognitive decline compared with placebo.
It is important to understand the goal:
Slower progression.
Not reversal.
Side Effects
Leqembi (IV)
Some people experience reactions during or shortly after the infusion, including:
Fever
Chills
Flu-like symptoms
Body aches
Nausea
Vomiting
Dizziness
Lightheadedness
Changes in blood pressure
Difficulty breathing
Rash
Most reactions occur with the first few treatments and are usually manageable. Your infusion team may slow the infusion or give medications beforehand if needed.
Leqembi IQLIK (Under-the-Skin Injection)
The newer injectable form may also cause:
Redness at the injection site
Bruising
Swelling
Pain
Itching or rash
These reactions are generally mild and temporary.
đź’Š Kisunla (Donanemab)
Kisunla is another FDA-approved anti-amyloid antibody.
Unlike Leqembi, some patients may be able to stop treatment after enough amyloid plaque has been cleared, depending on follow-up imaging and their physician's recommendations.
How is it given?
IV infusion approximately every four weeks.
Side Effects
The most common side effects include:
Headache
ARIA (brain swelling or bleeding)
Infusion-related reactions
Nausea
Flu-like symptoms
Blood pressure changes
Like Leqembi, Kisunla also carries a boxed FDA warning for ARIA.
🧠The Biggest Risk: ARIA
⚠️ What Is ARIA?
If you begin researching these medications...
You'll quickly hear one word.
ARIA
ARIA stands for:
Amyloid-Related Imaging Abnormalities
It can include:
Swelling in the brain (ARIA-E)
Small areas of bleeding (ARIA-H)
Many cases cause no symptoms and are found only on routine MRI scans.
This happens because the medication removes amyloid plaque from the brain, and in some people that process can temporarily cause:
ARIA-E (Edema)
Swelling in the brain.
ARIA-H (Hemorrhage)
Small areas of bleeding in or around the brain.
Most cases are mild and found only on routine MRI scans, but some people develop symptoms that require treatment to be paused or stopped. Rarely, ARIA can be severe or life-threatening.
🚨 Symptoms You Should Never Ignore
Call your neurologist immediately—or seek emergency care if severe—if your loved one develops:
New or severe headache
Sudden confusion that's worse than usual
Vision changes
Difficulty walking or loss of balance
Dizziness
Nausea or vomiting
New weakness or numbness
Seizures
Sudden personality changes
Difficulty speaking
These symptoms do not always mean ARIA, but they should never be ignored while receiving treatment.
Rarely, ARIA can become serious or even life-threatening. That's why regular MRI monitoring is part of treatment.
🧬 Should You Get APOE Genetic Testing?
Many neurologists recommend testing for the APOE ε4 gene before starting treatment.
People who inherit two copies (homozygous APOE ε4) have a significantly higher risk of developing ARIA and other serious complications while taking these medications. Knowing your APOE status doesn't determine whether you can receive treatment, but it helps you and your doctor make a more informed decision.
đź’Š Blood Thinners Matter
If your loved one takes medications such as:
Warfarin (Coumadin)
Apixaban (Eliquis)
Rivaroxaban (Xarelto)
Dabigatran (Pradaxa)
or other blood thinners, be sure your neurologist knows.
These medications can increase the risk of bleeding complications while receiving anti-amyloid therapy.
đź©ş Questions I Would Ask
If my neurologist recommended an infusion tomorrow, these would be my questions:
Am I actually a candidate?
Has Alzheimer's been confirmed with amyloid testing?
What stage am I in?
What benefit should we realistically expect?
What are my personal risks?
Should I have APOE genetic testing?
How often will I need MRI scans?
Will Medicare cover treatment?
What happens if ARIA develops?
How will we know if it's helping?
Write the answers down.
You're going to hear a lot of information.
đź’› Is It Worth It?
Only your family can answer that.
Some families decide:
"Any chance to slow this disease is worth it."
Others decide:
"The risks and monitoring aren't right for us."
Neither decision is wrong.
The important thing is making an informed decision together with your neurologist.
🌟 Why This Matters for Early Onset Alzheimer's
This is especially meaningful for families living with Early Onset Alzheimer's.
When someone is diagnosed at 50 or 60 years old, preserving months—or even years—of independence can mean:
More family vacations.
More birthdays remembered.
More conversations.
More time at home.
More moments with children and grandchildren.
That time is precious.
🏥 Where Do You Get These Treatments?
These are specialty treatments and are not typically given at your local primary care office.
Treatment usually begins with a referral to:
A neurologist specializing in dementia
A Memory Disorders Center
An Alzheimer's Disease Research Center
An academic medical center
A hospital infusion center
Your care team will typically arrange:
âś” Memory testing
âś” Amyloid PET scan or spinal fluid testing
âś” MRI scans
âś” Insurance authorization
âś” Infusion scheduling (or injectable training if appropriate)
The process often takes several weeks or months, so ask your neurologist early if you're interested.
To locate a specialist, start with:
🎵 Why "Don't Stop Believin'"
Because that's exactly what these treatments represent.
Not a miracle.
Not a cure.
Hope.
Hope backed by science.
Hope balanced with realistic expectations.
Hope that we may finally be entering a new era of Alzheimer's treatment.
And for families like ours...
Hope matters. (but we were just too late and they were approved when he was getting DX and was too far along)
đź’› My Take
These medications are giving many families something we didn't have just a few years ago:
A choice.
For some families, slowing the disease—even a little—is worth every MRI, every infusion, and every appointment.
For others, the risks, travel, monitoring, or stage of the disease make the decision different.
Neither choice is wrong.
The right decision is the one you make after having an honest conversation with your neurologist, understanding both the potential benefits and the risks, and deciding what aligns with your family's goals.
Hope is important.
So is being informed.
đź“š Learn More
đź’¬ Disclaimer
I’m not a doctor, lawyer, therapist, or expert—just a wife trying to figure this out one day at a time. Everything shared here is based on our experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with professionals when needed. I also use AI to help clean up my writing, organize thoughts, and pull together resources because honestly… caregiver brains are tired too. If something here helps another family feel less alone, then it’s worth sharing.
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