Doctor ordered MRI but she probably can't stay still. Is it worth it to try?

SarahTee · January 30

Hello,
This is in Pennsylvania. My mother-in-law is 83, living with us, certainly has some kind of dementia, but we don't have a specific diagnosis. Her primary care doctor ordered an MRI to help us get a diagnosis.

I told the doctor that MIL has a habit or tic of snorting and sniffling. It is almost constant. I am sure she could not suppress it for the 45 minutes the MRI takes. The doctor prescribed one pill of Lorazepam, which we can give her before the procedure. The doctor warned us that the medicine might cause a psychotic episode.

The MRI center staff said that if she starts the procedure and it can't be finished due to her not staying still, we would still have to pay for it.

I don't know if it's worth it to try to get the MRI done with or without the Lorazepam. It seems like a small chance of success. But is having the results from the MRI a reason to try? Would it help us get access to treatments or services?

Thank you to anyone with experience in this area for any advice.

M1 · January 30

Hi Sarah. This is a tough call. No imaging procedure will give you a definitive diagnosis; it is most useful for ruling out things like tumors and strokes. certain dementias like Lewy Body can have a characteristic appearance on MRI. But statistically, especially at her age, the most common dementia is a combination of Alzheimer's and vascular.

The actual imaging time is only a few minutes, but she would still need to hold still and might even be asked to hold her breath. The lorazepam is more likely to put her to sleep than to cause psychosis. She would need to be watched carefully for probably eight hours if you gave it, and might not be able to walk or transfer independently afterwards without a high risk of falls. That's important for considering getting her to and from the procedure. To be effective, you'd probably need to give it at least an hour ahead of time.

Regarding the cost, her Medicare would likely cover most of it though this time of year she could still have a deductible, depending on her coverage.

I personally wouldn't pursue it. There's not going to be much in the way of treatment options anyway. But it's hard to make that call without knowing more.

MN Chickadee · January 30

I would try the lorazepam on a different day a week before and see how it goes - you don't want to risk an adverse reaction during such a procedure. I wish I had done that with my 84 year old dad who does not have dementia, he just had jitters over having an MRI. The timing was off and the ativan didn't kick in until it was over. Then he needed supervision and help moving for the next 12 hours to prevent him from falling over. Getting him, who is fully in control of his body and his mind is sound, through a 45 minute MRI was difficult. I can't imagine doing it with a PWD. My mother with Alz had an MRI but she was very early in the disease and able to fully cooperate and participate in her care at the time. (FYI it didn't show us anything useful at the time. It still took years to get her diagnosed; she had early onset.)

If it were me, I would probably use the other tools available to do a suspected diagnosis by elimination. While an MRI is nice it may not tell you much useful information and the risks of paying for it when it doesn't work out seem high. Chances are good it will show some atrophy and they'll say it's likely Alzheimer's or vascular dementia, which really won't change the nature of treatment or care. There isn't treatment for any of the forms of dementia, unless you are looking at clinical trials or the newest (and controversial) treatment that is intravenous and not something I would probably put an 83 year old through even if they were approved for it. The idea behind unturning every stone with imaging is there is a small chance there is something more unusual causing the dementia (fronto temporal dementia, brain tumor etc.) but odds are good that it's the more common ones, either Alz or vascular. The doc would likely prescribe aricept or namenda for a while, and no matter what it is you will need to do the financial and logistical planning for her long term care and educate yourself on dementia communication techniques. In many ways nothing changes with the MRI results. There are best practices for diagnosing, but not everyone is able to do them all for a variety of reasons. You could also inquire about a PET scan or lumbar puncture if you think she may tolerate those better, they can also be used in diagnosing dementia in some cases. If it were me I'd probably forego any invasive testing just run with "dementia" for now and read up on Alz as a basis to understand brain changes and plan accordingly.

forbarbara · January 30

I’m sorry you’re going through this but really glad you asked this question. Others here will have a better handle on financial and medical implications, but here’s my experience.

My MIL was given a vascular dementia diagnosis based on her behaviors - she declined from stage 3 to stage 5 in about 3 months. Her family doctor was terrible - never even discussed dementia even though she couldn’t self-medicate and was very confused. This was accompanied by such a significant weight loss that I was able to get hospice involved and they gave her the diagnosis. I didn’t even learn about the stages until after she was safely in a MC facility.

I have never felt a need to confirm her diagnosis through tests, other than testing for UTI when needed. The MC doesn’t need it either since they’re getting paid.

Good luck and let us know how it goes.

ButterflyWings · January 30

The MRI showed us nothing. In fact, the "unremarkable" brain results (in terms of no major red flags) gave false reassurance to both the memory clinic and DH's PCP. They literally gave him the "all clear, nothing to see here". So, in a sense it backfired because it left him to run along unsupervised and both of us uninformed at a critical time. Lots of serious financial mistakes were made before I ever realized DH was having problems that I couldn't have even imagined without suspecting, researching and learning about dementia. Experts said he didn't have it, so...

It was a year later before we found for sure he had MCI at least, and soon afterward confirmation of Alz indicators through my persistence that we needed an answer to what was continuing to happen to him. Personality changes, spatial issues (including moving violations, car had dents and dings and broken axle from potholes and curb scrapes, etc.), wacky decisions and behavior at home, short term memory non-existent and he was clearly progressing fast.

I think the members comments above are spot on. If you can find other less expensive ways to rule out something treatable, I'd do that. Otherwise, learn a lot about the dementias and how to cope as caregiver. He was much earlier on so there were no issues lying still or having it covered by Medicare. But the MRI didn't help at all.

SarahTee · January 30

Thank you very much to everyone who commented. I am encouraged by what seems like a consensus that the MRI is not going to be a magic key that unlocks a treasure trove of solutions. At the same time, it feels like a serious thing to decline what the doctor recommended for her. My husband and I will consider everything we've learned so far before we make a final decision.

Again, thank you all for your kind and thoughtful replies. I appreciate you very much.

ButterflyWings · January 30

It may help you to know that M1 is both a spouse caregiver, and a physician.

Also, you may want to be very careful and strategic about time of day for dosing with Ativan/Lorazepam. My DH is one who can't take Lorazepam after 1p or so. It has the opposite effect on him -- taken in the morning, it made him a bit lethargic and even dizzy (aka a fall risk). We only used it a few times as a result, when it was really urgent as the only way to keep him from eloping and/or endangering himself or others while in the throes of a UTI. The docs had me use it a few times in an emergency only until his regular meds could kick in.

Well, taking the same low dose of Lorazepam in the afternoon made him angry, agitated, profane -- like Jekyll and Hyde! Weird how just a few hours can make such a difference, but it did. So I decided to avoid this med altogether, although it is a staple in the 'comfort kit' that hospice provides. An extra 25 mg Seroquel pill is approved by his neuropsych as needed instead. I've had to give strict instructions at respite care and in the hospital the rare times he was there, that Lorazepam is a drug he should NOT be given, especially since it is technically used in those instances as a chemical restraint. And in theory, that's a no-no. But when the family caregiver's away as they say...

I hope you get the answers you all want and need. Sorry you and your loved ones have to go through this. We are right there with you, unfortunately.

Quilting brings calm · January 30

Ask if she can have a CT scan instead. Mom’s Neurology NP ordered a CT scan instead of an MRI because she felt Mom wouldn’t stay still for an MRI.

MN Chickadee · January 30

Some physicians are surprisingly clueless about caregiving and day to day life with a PWD and what medical interventions are appropriate. Something they would recommend for a cognitively normal person may be wrong for someone with dementia but they have a hard time pivoting to that and setting aside the "do everything I can" mindset, and understandably so. The best physicians I encountered with my mother were ones who had also lived through their own parents having it.

DCCEPEK · January 30

Welcome, personally I wouldn't put her through it if. You suffer the consequences. Stay on the forum you want regret it. Very knowledgeable people here. Caring you come to the right place.

housefinch · January 31

I’m a pediatrician. There are some rapid MRI options they use for infants and children, to avoid sedation, in certain circumstances. I don’t know if those protocols give adequate information (eg level of detail of the brain imaging etc) to be used in adults with dementia. I agree with everyone above otherwise (obviously I don’t take care of dementia patients). Best wishes making your decision.

Belle · January 31

Adding another data point. The first family member we had that was diagnosed with Alz also had a tic that caused an unreadable MRI scan as they were constantly were clicking their tongue and their head was moving during the scan The second MRI, done a few weeks later, was done with lorazepam and that worked out fine Honestly though it was a waste of time because nothing significant was found and they were finally diagnosed using a PET scan which was a much quicker procedure. Also our LO became VERY agitated on Ativan and luckily we knew that before the MRI so something else was prescribed. So it turns out that in our case the MRI was not helpful in diagnosis.

tigersmom · January 31

I would not put your MIL through this. My Dh was diagnosed 2.5 years ago with a PET MRI. I estimated him at the time as early stage 4. The test terrified him. Every aspect of it --the isotope, the head cage, being in the tube, the noise during the test, freaked him out. We only got through it because I stood outside the tube gripping his hand, begging him to stay still. And my husband was a doctor. The test was stopped 20 minutes in when he could take no more. As they slid him out, the very mean nurse snapped at me that they'd be lucky to get anything out of it since he moved around so much. Thankfully, she was wrong -- plenty of info to prove he had mixed dementia, ALZ and VAD, with some very disturbing percentiles of his brain function. But I would never do that again. They knew what they were trying to diagnose, so none of this should have surprised them. I was pretty mad about it at the time, and very sad for him.

GailBD · September 21

Thank you all for your comments. I scheduled an appointment for an MRI for my mother; but when I made an appointment, the scheduler asked me questions that the doctor should have advised me about—like does mother have any metal in her body. I said no at first; but remembered later that she had broken both knee caps years ago and probably has metal therein. They said the MRI would burn any metals on her.

Then they asked if she was claustrophobic. I don't know; but with her dementia, she might start spazzing out. She is unpredictable. She is 92 years old, so I don't need her to have a treatment that could cause her to lose balance and fall. If this does nothing but cost more money; I am going to cancel out.

M1 · September 21

welcome to the forum Gail. I can’t imagine what benefit an MRI would have for a 92 year old. What could you possibly find that you would do anything about? Read Being Mortal by Atul Gawande.

harshedbuzz · September 21

GailBD—

I agree with the others that it's probably not worth doing for the information you might get from it.

BTW, my mom had an MRI a few months ago. She has dental implants, 2 artificial knees and an artificial heart valve. Her oral surgeon and orthopedic surgeon cleared her for the MRI. I Called the emergency number of the valve and was told by them she could have it done safely using specific settings on the machine; I passed their number onto the MRI scheduler and also the tech ahead of time. The tech, who was familiar with this, had already contacted the device manufacturer and obtained the settings needed.

HB