Has anyone used out-of-pocket AD biomarker blood tests (p-tau217, amyloid blood test)

YellowJJ

Posting on behalf of a family in Virginia dealing with a frustrating situation.

My friend's father is showing clear functional decline in daily life — the family has noticed definite changes — but his screaning test(maybe MoCA?) came back normal. Because of that result, his doctor is refusing to order further workup like neuropsych testing or imaging.
He's highly educated, and we've read that cognitive reserve can mask early dementia on screening tests even when something is actually wrong — and that when decline does come, it can be rapid. So stopping here feels really risky.
We came across blood biomarker tests for Alzheimer's, specifically p-tau217 and an amyloid blood test.

A few questions:

1. Did the results actually change anything? Did your doctor agree to order further testing after seeing an abnormal result?
2. Did it help with insurance at all?
3. How did you even get the test done? Most routes seem to go through a clinic. Is there any way to order through a lab directly or any other groups? I looked into it online, but most places require you to buy it as part of their treatment program, or the wait times are really long — so I haven't been able to recommend anything to my friend yet.

Any experiences would be really appreciated, positive or negative. Thanks.

H1235

My mom did fine on the pcp in office test (and she only has a high she education). I insisted on a referral. After a 2 hour evaluation the neuropsych said she should not live alone and was not safe to drive. We were also told to see a lawyer as soon as possible. If they haven’t done this yet, they shouldn’t wait for a diagnosis. A DPOA is very important. There was other testing imaging, bloodwork that followed to determine the type of dementia (vascular). I would look for a different doctor. Have they given the doctor specific examples of things that are causing concern? I know that can be difficult with him in the room. A letter/email/patient portal note to the doctor explaining what is happening might help. I think the most important thing in the process was to rule out treatable causes. I don’t think a p-tau217, amyloid blood test will do anything to diagnose vascular dementia(the second most common type of dementia). Beyond that there was not much that could be done for her.

harshedbuzz

@YellowJJ

Hi and welcome. You are a good friend to be reaching out.

This family is in a tricky spot. BTDT, and have merch from both parents.

In medicine, the physician has a responsibility to their patient and may feel justified in honoring his wish to avoid unnecessary tests if he's not seeing symptoms. This is especially likely if the family, rather than the patient, is doing the asking.

Two traits associated with dementia might play into the above. PWD can showtime— that is, they can get their acts together temporarily for doctors, friends and non-caregiving family. The other complication is anosognosia which is when the PWD is unaware of the changes in their thinking and cognition which can make them feel as though they're at risk for loss of their autonomy for what might be nefarious reasons.

My dad was like your friend's dad. Unusually bright and well-educated. In retrospect, he lived with mixed dementia for at least 14 years but was only diagnosed 15 months before he died. MoCA is a rather blunt instrument IMO. I saw my dad get a 24 (MCI) about 6 months before he died at a time where he didn't recognize a community in which he had a business and was incontinent. After the test, he bragged about how he'd aced it and was "off the charts" all the way down to the valet stand where he got into a random woman's car while I was turning in our ticket. Off the charts indeed.

The thing is the dementias, and you could be seeing one that isn't Alzheimer's, have symptoms early-on that are separate from memory. One would expect to see changes in personality— a lack of enthusiasm for former hobbies, a lack of empathy, poor executive function skills, maybe even mood changes. Their vocabulary might change— word-finding issues, more simplistic sentence structure, nouns disappearing are common. With my dad, his code switch was to a more elevated language which was just weird.

Was this doctor his PCP? IME, with my mom, when she and I raised concerns with her PCP who is by-the-book, he ordered a panel of bloodwork and imaging (MRI). Do you know if this was done along with MoCA? There are different forms of dementia as well as treatable conditions that can mimic dementia so it's critical to rule these out. In mom's case, she had untreated Lyme Disease and her cognition improved with treatment. With dad, who was evaluated late in the game, one of his dementias was an alcohol-related dementia caused by a vitamin deficiency. Treated and with lifestyle changes, he improved for a time until his Alzheimer's worsened.

You asked:

1. Did the results actually change anything? Did your doctor agree to order further testing after seeing an abnormal result? TBH, no. Dad had a full evaluation with a shorter version neuropsych. Once dad was treated for the vitamin deficiency, the memory clinic had little to offer. We did get dad in to see a geriatric psychiatrist for medication for challenging behaviors. He was an important part of the team. These days there are newer infusion medications that are meant to keep a person in a milder stage for a matter of months longer specifically for Alzheimer's. There is information coming out that suggest these meds are not as effective as the public has been told. These meds aren't used for vascular or FTD dementia.

2. Did it help with insurance at all? In what way? If a person was seeking the newer infusion meds, they would need proof of amyloid. I know a spinal tap or PET scan can be used; I think the blood test is also accepted. Medical insurance (commercial or Medicare) doesn't pay for custodial or caregiving services for dementia.

3. How did you even get the test done? Most routes seem to go through a clinic. Is there any way to order through a lab directly or any other groups? I looked into it online, but most places require you to buy it as part of their treatment program, or the wait times are really long — so I haven't been able to recommend anything to my friend yet. It doesn't seem as though any of the direct-to-consumer labs offer this specific test. In this family's shoes, I would get on the wait list for a memory clinic. Hopefully dad will be willing to attend the appointment which would bring more clarity. At the end of the day, once you have ruled out what is potentially treatable, there isn't much medicine has to offer. In the meantime, family should make sure the legal pieces are in place. The spouse, if there is one, might wish to discretely change their POA to be someone other than dad and they may wish to discuss Medicaid planning as it relates to their assets. Adult children should make sure they have a Plan B in the event something happens to the spouse.

I understand the frustration.

HB

MN Chickadee

I'd see a different doctor that is more willing to work with the family. This won't go away - there will be many more times down the road the family needs the doc to work with them and hear them out as difficult behaviors develop. If it isn't possible to switch docs have the family send a letter or patient portal note to the doc describing what they are seeing at home. If the doc has more documented than just the MOCA score he may be willing to do more, and if it keeps coming up may order further tests just to make the family lay off a bit. They have often thousands of patients and are flying through charts and follow up, possibly not giving it a ton of thought. I have found if I follow up on something they often change their tune and give it more attention. The importance of advocating for yourself and loved ones in the US medical system cannot be over stated.
Full testing usually involves blood work, an MRI or other imaging, and an evaluation by neuro-psych that takes a number of hours (this is things like cognitive exams, problem solving, remembering a word a half hour later etc.) and then this is all reviewed by a neurologist. How and where this happens depends on your location and the local resources for care. Some people are able to go to a large teaching hospital with a memory center. Others have their PCP clinic do what they can and maybe traveling to a larger city once or twice for neurology. For some families it's important. It may be needed to trigger a POA that requires a diagnosis depending on how it is written, or if it turns up a form of dementia other than Alzheimers because some dementias cannot take certain drugs that one would for Alz. Dementias such as Fronto Temporal or Lewy Body for example require different approaches. Occasionally the work up finds some other cause of the symptoms (brain tumor, normal pressure hydrocephalous, vitamin deficiency etc.) For other families it tells them what they already knew and doesn't change a whole lot. A doc would start most people on Aricept or similar if it's one of the usual dementias, and sometimes more heavy duty drugs later for anxiety or behavior issues, but otherwise not much for medical intervention. Ideally everyone gets the full work up in order to have all the information to make decisions. However there are definitely circumstances where it doesn't happen and people get by.

Michele P

Our neurologist ordered all of the tests including the blood test for Alzheimer’s, standard bloodwork to rule anything else out, a brain MRI, brain PET scan, and referral to a neuropsychologist. The MOCA is just one test. If he has a cognitive reserve, the other testing is necessary. I would have the person you are trying to help take notes of symptoms and behavior's to share with a neurologist. If a neurologist is refusing to test further, find another neurologist.