First appointment - what should I ask?

MsBeano

Looking back on what you now know, what should I - the caretaker - ask the neurologist at the first appointment? What do you wish you had asked?

My wife is 61 with a father and grandmother who had AD. She had a blood test last week with a positive for tau (whatever?) and a ct scan that was “not terrible” (upon brief review by her primary care) and a 26/30 MOCA. Tomorrow is the first visit with a neurologist.

SDianeL

welcome. Sorry about your wife’s diagnosis. Unfortunately doctors aren’t much help. If your wife has EOAD ask about infusions and ask about the side effects. You will learn more here in this online forum in my opinion. Come back after the appointment and ask questions here. First priority is to meet with an Elder Care Attorney and get your legal affairs in order. DPOA, Medical POA, wills, etc. don’t delay.

JulietteBee

I am so sorry to hear of your wife's diagnosis.

My mom was diagnosed by an MMSE test in Dec. 2024. She had an abnormal MRI in July 2025. In October 2025, she totally bombed the S.L.U.M.S test with its infamous "Clock test." She was finally referred to a neurologist in Dec. 2025. The neurologist reviewed her MRI which shows "Severe" disease, most likely multifocal in nature. Ie: a little Vascular, a little Alzheimers, etc. Mom is going to have a 2 hour neuro-psychological exam this month.

In response to your question, these are the questions I hope to have answered after her testing is complete. I think they are also what you would like to know as well.

Dementia:
1b. Type?
1c. Stage?
1d. Treatment? 1e. Prognosis?

Additional testing: Lumipulse blood test and/or PET scan!

All the best to you as you seek answers, like me, to the questions that most likely keep you awake at night.🫂

SDianeL

Many doctors won’t discuss stages because each person progresses differently. The tool we post here is DBAT. Here’s the link: https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

frankay

Do a lot of reading on this site and elsewhere and then ask the questions you're most curious about. Don't be surprised by very evasive answers. I think the most important one is who would you feel most comfortable prescribing psychiatric drugs should she need them. Our primary care doctor said keep our neurologist because she didn't feel comfortable prescribing psychiatric drugs. Some neurologists may not keep her as a patient without regular visits. Ours said no problem, call them if we ever need them. We haven't been back for years since DH has had no need for any medication beyond the original Aricept and Namenda which may or may not have helped. You'll get a lot of practical help on this site,

harshedbuzz

@MsBeano

How did your appointment go?

HB

MsBeano

Thanks for all the answers. It’s been a roller coaster but now it looks like early onset diagnosis is confirmed. We are planning on bucket list travels for this year.

Michele P

https://alzconnected.org/discussion/75217/first-appointment-what-should-i-ask

Welcome. In order to get a definitive diagnosis of the neurodegenerative disease, you need the neurologist to order the blood test specifically for Alzheimer’s, an MRI and PET scan. A neuropsychologist should do extensive cognitive testing on your loved one. I would ask about the stage, what treatment options are available, how can we slow up the progression? I would ask for a referral for a geriatric psychiatrist in the event medication is necessary from a psychiatrist.
Brain HQ online brain games will help. If you have a Mayo Clinic near you, ask for a referral to The HABIT Program. It is excellent and helps the patient and caregiver. It was life changing for us. They will train you in Brain HQ.