A cautionary tale. Misdiagnosed dementia causing big problem.

Started by

My mother has major health issues (CHF, COPD, etc). A couple months ago she started having major hallucinations, delusions, accusations of being beaten when she actually had fallen. Naturally we rushed her to the hospital (closest one, quite small). Treated for Uti, saw neuro who checked for other issues, then said she "may" have dementia with Lewy bodies. He said only time could tell for sure.

Fast forward, two more trips to ER, no results. So the last time, eight days ago, took her to different hospital Major UTI, actually tested this time and found she has antibiotic resistant bacteria. Treated properly she has made remarkable progress, almost back to her old self.

Now the problem. Due to the diagnosis of LBD none of the local nursing homes will take her, our only options take her home (not the level of care she needs) or ship her OUT OF STATE to a home for "difficult" dementia cases! Any thoughts on how to straighten out this mess? We are desperate.

BTW have first follow up with that neuro this coming week.


Wow, good luck with this. Hopefully the Neuro will write the original diagnosis was wrong and they will accept this!
Huh. A Doctor put in writing he made a mistake?

Thanks tho...
Since when is LBD that much more difficult than other FTD and vascular? Plus, yes, they could stipulate that LBD was only suspected, not confirmed and at this point not the working diagnosis.
Wasn't it R/O Dementia with Lewy Bodies? Not a DX of? Which can only be made definitively by autopsy, I believe.

There are NHs and ALs that will not accept patients with dementia at all. sure, they have dementia patients, but those that develop it afterwards. Who is giving you this information that they are not accepting her due to the LBD dx?
Right or wrong, get further testing if insurance will cover it. It is possible to have LBD in addition to a UTI
LBD behaviors can be very difficult. So can any kind of dementia. And LBD patients can have mild symptoms. So can any kind of dementia.

What century are those nursing homes operating in?

Once when my husband was hospitalized the woman who was his first nurse said to me, "Oh. LBD. I've seen that before. It is the really violent one, isn't it?" I told her that this patient had never been violent. We'd have to wait and see how it went in the hospital. On the third day she came in to say she was off a few days and he'd probably be discharged before she came back. "Well, I learned something about LBD. He is a real sweetie, and no problem at all. I guess all cases aren't the same."

I can understand a care center saying they weren't equipped to handle certain kind of behaviors. But to reject an application from someone who has not demonstrated those behaviors seem to me to be discriminatory. If you want Mom in one of these local facilities, contact the ombudsman.

Hallucinations are a hallmark of LBD, so I can see the neuro thinking that if she does have dementia (time will tell) then LBD should be considered strongly.

But for heavens' sakes, hallucinations are a hallmark of UTIs, too. Surely that observation of what to keep in mind as the future unfolds can't be taken as a diagnosis.
Thanks to all responders. Yes it was told to two social workers from two different hospitals they would not take her due to the possible LBD. We thought it was dicriminatory too. This is a large chain of nursing homes and they gave all three closest to home. Mom has never been violent. I think it is fear of false accusations that is driving them. Will see if I can locate an ombudsman, great idea.
Sorry they have all three, not gave
As far as I know, ANY kind of dementia can include the paranoid accusation phase. To single out one kind is ridiculous!

Dementia behaviors can be very challenging. I understand fear of inappropriate and disturbing behaviors. But to ban people on the basis of tentative diagnoses when the people do not exhibit the worrisome behaviors is not good business, not good medical practice, and simple discrimination.

Do let us know how this works out for you.

(By the way, each case is unique, but in general there is less brain cell death in LBD than in ALZ, for example, and that often means LBD patients respond better to drugs.)

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support