h

My moms PCP saw her every 2 or 3 months and did a very basic test once a year. She never suspected a thing. The doctor knew she was living (basically) alone and that she was driving. It was only at my insistence that she saw a neurologist. After 2 hours of testing the neurologist said she should not drive, should not live alone and we should see a lawyer right away to get legal matters taken care of. The PCP was clueless. Your mom is their patient and they serve her. Some may feel it’s unethical to work around or behind a patients back. Even with the diagnosis my moms sleep specialist spent 15 mins explaining how to change the settings on the cpap machine. It was big and bold on the papers that she has dementia. It’s like they don’t even have a basic understanding of dementia. Did you get the referral to a neurologist? How is your mom, will she even go? So frustrating.

@Merla

That does sound like the stuff of nightmares.

What often happens in terms of getting to a diagnosis can take some time. Most people start with a PCP who does a screening and bloodwork/imaging to rule out lesions or other conditions that mimic dementia's symptoms. From there, many people move on to a Memory Clinic or neurology practice focused on dementia. This can take some time; I put my mom on the callback list in April (her PCP ordered the initial testing— she had Lyme Disease and gave a referral) at the memory center where my dad was seen. I expect to hear from them in about a month to schedule an appointment 4-6 months (fingers crossed) out. They've been slammed since Leqembi was approved and many folks are seeking the center out as they offer the infusions.

Once you're seen, the neurologist will probably order further testing (maybe a PET scan or in-depth cognitive testing) which could take 1-2 months IME, after which you'll have a second consult to review findings. Unless you mom is very impaired, the doctor may wait 6 months to evaluate her again before giving a diagnosis beyond MCI.

HB