🎵 “Doctor! Doctor!” – EOA What to Ask and What to Expect (Thompson Twins)
Updated: Jul 12
I loved the 80s and 90s.
Honestly?
Best time of my life.
Carefree.
No phones recording everything.
No social media stealing your time.
Home before the streetlights came on… and I was in shape 😄
And the best part?
👉 The music.
Rock. Rap. Alternative.
Even “new country” (hello Garth Brooks).
Life was moving along, maybe like me you were just on the brink of Empty Nest (our daughter was a junior in HS when we started seeing strange behavior). Maybe you and your spouse were planning your retirment years. Maybe you were planning divorce because things had been off few years and he/she was having mental health issues, erractic behaviors, mood swings....
🧠 And Then… Something Feels Off
Now you’re here.
You’ve noticed signs.Your spouse—or you—know something isn’t right.
But no one is quite sure what it is yet.
So…
👉 You go to the doctor.
And suddenly you’re asking:
“What tests do we need?”
“How do we actually get a diagnosis?”
🧪 Let’s Break It Down (What You’ll Likely Need)
There is no one test.
👉 It’s a combination.
And if you’re trying to get an official diagnosis (especially for disability), you’ll typically need:
Cognitive testing
Brain imaging
Medical evaluation
Spinal Tap
Blood Test for markets (APO4/3 genes) PTau
Often a PET scan + neuropsych evaluation
🧠 Cognitive & Neuropsychological Testing (Start Here)
These test:
Memory
Language
Attention
Problem-solving
👉 Who to see:
Neurologist
Neuropsychologist (specializing in brain disorders)
Common Tests You’ll Hear About:
MMSE (Mini-Mental State Exam)
Basic screening for memory, orientation, etc.
MoCA (Montreal Cognitive Assessment)
👉 More sensitive (especially for early stages)
Mini-Cog
Quick 3-minute test + clock drawing
ACE-R (Addenbrooke’s)
Broader cognitive screening
🏥 Medical History & Physical
This is important to:
👉 Rule out other causes(stress, vitamin deficiencies, thyroid, etc.)
🧠 Brain Imaging
MRI or CT Scan
Looks at brain structure
Rules out tumors, strokes, etc.
👉 My opinion (IMO):MRI did not give us clear answers for Early Onset.
🧪 Amyloid PET Scan (Big One)
This is the one that gave us clarity.
👉 Detects amyloid plaques in the brain👉 Strong indicator for Alzheimer’s
BUT:
Expensive: ~$5,000–$8,000
Insurance often pushes back
👉 Check your coverage first
🩸 Blood Tests (Newer Option)
These are becoming more common.
Cost:👉 ~$300–$500 out of pocket (as of recent years)
Types:
Amyloid Beta (Aβ)
→ Indicates plaque buildup
Phosphorylated Tau (p-tau)
→ Indicates tangles (another Alzheimer’s marker)
👉 These are promising—but still evolving
🧬 Genetic Testing
Looks for markers like:
APOE3
APOE4
👉 Can indicate risk, especially for early onset
⚠️ Note:
Not always covered by insurance (but it was $300 in 2024 at Labcorp)
Doesn’t always change treatment
💉 Spinal Tap (CSF Test)
I’ve heard:
👉 Most accurate
👉 Also the most invasive
This measures:
Amyloid
Tau proteins directly from spinal fluid
💰 Let’s Talk Insurance (Because… reality)
This part matters.
✔️ Check Your Policy
Coverage varies A LOT.
✔️ Pre-Authorization
Some tests (especially PET scans) require approval first.
✔️ Call Your Insurance
Ask specifically:
What’s covered?
What’s not?
What’s considered “experimental”?
💡 My Recommendation (From Experience)
If I were starting over:
👉 Start with:
Blood work
Cognitive testing
Then move to:
Neuropsych evaluation
PET scan (if needed/possible)
⚠️ Real Talk
This process is:
Confusing
Expensive
Emotional
And sometimes slow.
You may feel like:
👉 You know something is wrong
👉 But you can’t “prove” it yet
Keep going. It took us a year to get DX.
🎵 Final Thought
“Doctor, doctor… can’t you see I’m burning, burning…”
That feeling?
👉 That urgency
👉 That need for answers
It’s real.
And you deserve clarity.
💛 My Advice
Advocate.
Ask questions.
Push (when needed).
Because early answers?
👉 Matter more than you think. There are so many new medicines out that can SLOW
progression and give you more time.
💬 Disclaimer
I’m not a medical professional—just a caregiver sharing our personal journey with Early Onset Alzheimer’s. Every situation is different, so please use what works for your family and consult medical, legal, or mental health professionals when needed.
This blog combines my real-life experiences with research, shared caregiver insight, and AI-assisted editing to help organize information and make these difficult topics easier to read and navigate. We’re all just trying to survive and help each other through it.
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