amyloid pet scan and Medicare Advantage

you do not need a PET scan to diagnose dementia. That is done through neurocognitive testing. Beyond that, there is no point in getting a PET scan. It won’t change the outcome and would not impact care significantly.

I agree with Marta, Please see that a diagnosis is made following proper protocol. Lots about that online for you to read.

I agree with the above. I had an Amyvid PET scan done which confirmed that I do not have Alzheimer's Disease. This scan was done via my participation in a clinical trial that allowed me to avoid the $6000 cost.

Iris

A couple of thoughts.

Did you get this information from your insurance company or is it hear-say? FTR, what physicians and their staff konw about insurance coverage is not always up to date as it's a moving target. My mom's retina specialist wanted to offer her a brand-new injection for her advanced GA but told us "Regular Medicaid will cover it, but your Aetna MAP won't yet." Mom was crestfallen. I was surprised as she's a retired teacher and has always had access to top-of-the-line care; she got dad a PET scan to differentiate between diagnoses on regular Medicare via her retiree supplement. We went home and I made some calls. Turns out her Medicare Part D provider does cover it through her preferred provider specialty pharmacy. TL;DR if you haven't talked with a patient "navigator" at your policy administrator consider doing so. If the answer is "no" and you can change plans, perhaps you opt to do that at the next open enrollment if you feel strongly about this.

Do you need to know this? Most dementias progress and are managed pretty similarly. FTD sometimes responds badly to ALzheimer's meds and a PET scan might be needed to access Leqembi. Dad did have a PET scan— his doctor wanted to differentiate between Alzheimer's and WKS (an alcohol-related dementia). The test showed features of both conditions so it didn't really change what we doing in terms of care.

Are you open to other testing? Would a spinal tap offer the information you need? Would you get more information from neurocognitive testing as Marta suggested? I'm in early stages of having mom worked up based on our shared concern about her recent lack of focus and memory lapses. We've done blood work and are doing a contrast MRI next week and an appointment at the memory center towards the end of the year. I don't know that I would do the PET scan going forward, although I might accept the neuro-cog testing for her.

We talked about Leqembi when it was first in the news because of our experience with dad. His former doctor was involved in the clinical trials and is often quoted in press about the new medication. Given the risks and benefits, I wouldn't encourage mom to try it given how little it seems to offer women specifically and the risks/inconvenience of the infusions.

Age plays into this. If he were much younger, the odds of it being something other than Alzheimer's would skew the risk/benefit in favor of a deeper dive.

That said, I can really appreciate the need of some people to feel as though they really need to know exactly what it is that is doing this to their LO. I am also such a person.

HB