Brand new here; question about ptau217 test

nicomart

My mom (68) was evaluated by a neurologist last month for suspected cognitive impairment. She performed poorly on the cognitive tests that were administered. The doctor ordered bloodwork, and today we learned that (a) she is an ApoE3/4 carrier and (b) her Quest PTAU217 level was 0.19. The note on her e-chart stated that these results are consistent with mild cognitive impairment and symptomatic of Alzheimer’s disease. She also has an MRI scheduled, but not for another six weeks.

I understand these results are concerning, but I’m wondering: is it possible this could be a false positive? She doesn’t have other health conditions (such as kidney disease) that I believe could explain an elevated PTAU217. Alternatively, has anyone had a parent with elevated PTAU217 who ultimately did not have Alzheimer’s?

The wait until her next appointment feels very long, and I’m trying to prepare myself—and my parents, who are still in denial about how serious this may be.

Thank you so much for your time. I’m sorry if I’m asking prematurely, given that her diagnosis isn’t official yet.

SDianeL

Welcome. Sorry about your Mom’s diagnosis. I don’t have experience with  PTAU217 but found online info in quotes below. It looks like from your post that your Mom definitely has cognitive decline which usually means dementia. Alzheimer’s is a form of dementia. “A positive PTAU217 result indicates the likely presence of AD-related amyloid plaque and tau pathology in the brain and is supportive of AD being the cause of a patient's current symptoms. The test is not a standalone diagnostic tool and must be considered alongside a patient's clinical information and other tests.” So if they rule out other causes of cognitive issues and the MRI shows white matter disease, the diagnosis should say consistent with Alzheimer’s. It’s very difficult to diagnose dementia vs Alzheimer’s. That’s why the Neurologists usually say “consistent with”. While you’re waiting to see if someone answers your specific question, you can try to search this forum using the search feature at the top of the page. Just put in PTAU217

SDianeL

found this from Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests

H1235

Welcome. I don’t know anything about PTAU217, but I do have some dementia resources to share. It may seem premature, but there is so much to learn and do that you might want to get started. As soon as mom was diagnosed the neurologist recommended we see a lawyer. Regardless of what the diagnosis is your mom is having some trouble (preforming poorly on the cognitive test) and legal matters should be addressed. The usual would be a will, living will, durable power of attorney(this is very important ) and medical power of attorney. If your parents are in denial just suggest they are getting older and this is just something they should have done. I would not even mention dementia. As far a the denial goes, many with dementia have anosognosia. This is the inability to recognize their own symptoms or limitations. It makes things very difficult. The number one rule with dementia is never argue or try to reason with a person with dementia. If she doesn’t believe she has dementia don’t try to convince her. You know, that’s what matters. Your dad is another story. I’m not sure how you get through to him. This site is a great resource.

DBAT.pdf

understanding-the-dementia-experience.pdf

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

You aren't too early to be here. If you're concerned, this is the place to be. You've already gotten some terrific advice regarding steps your parents need to take now.

Additionally, if they don't have LTC insurance or unlimited funds, your dad should be discussing Medicaid planning with an elder law attorney as he may be able to shelter some funds if he acts now. Now is also the time for you to start thinking about making your Plan B in the event dad can't care for her because of his own health or passing. One third of caregivers pass before their LOs.

A couple of thoughts—

The diagnosis of Alzheimer's is a process of ruling out other causes of cognitive impairment including other kinds of dementia. Normally bloodwork is done to r/o hormonal or vitamin deficiencies that can mimic dementia but are treatable as well as imaging to r/o white matter disease or lesions. It is possible to have evidence of biomarkers in the brain but not symptoms of dementia. Sadly, given your mom's poor performance on the cognitive tests, she's probably not one of those people.

https://www.sciencealert.com/dementia-expert-reveals-why-some-brains-with-alzheimers-signs-have-no-symptoms

It's not uncommon for spouses to be in denial of this diagnosis for a lot of reasons. My own mother ignored my pleas to have dad evaluated for a decade. In part, I think she was like the frog in a warm pot of water set to boil who doesn't register the danger. There's also the notion that this illness, "the long goodbye", is one that will rob them both of their plans for their golden years as well as their shared history, consortium, and companionship.

Another concept to understand in dementia is anosognosia. This is when a PWD is unable to recognize the cognitive changes and abilities they've lost. While they may "know" of their diagnosis and even that they sometimes forget things, they've oblivious to how profound and impactful the loss is.

I can appreciate how hard it is to wait. Ugh.

HB

nicomart

Thank you all for your thoughtful replies. Thankfully, I am already their medical proxy and have power of attorney (we took care of this after a major health scare with my dad several years ago). I guess we just have to wait, even thought I am fairly certain of what the outcome will be. I am so thankful I have found this kind and empathic community.