Has Your Loved One Ever Had Behavioral/Cognitive Changes from Both UTI & Medicine?

Marp

Hello,

Recently, my sister, who has Alzheimer's, was started on an anti-seizure medication. Shortly thereafter, she started exhibiting extreme behaviors and the staff at her memory care unit were concerned she had a UTI.

I took her to her neurologist who said it was the anti-seizure medication that caused her symptoms and started her on a titration to transition her to another anti-seizure medication.

In the meantime, her primary care doctor ordered a test for a UTI as a precaution. He hasn't reviewed the test results yet, but I saw them online, and it looks like she might have a UTI.

Is it possible the neurologist jumped the gun and started switching the medicine too soon?

The symptoms started within a couple of days of starting the anti-seizure med, but maybe the UTI was brewing too and we didn't know it yet.

Quilting brings calm

Extreme behavior and cognitive changes are common with a UTI in the elderly. It is indeed possible that the neurologist jumped the gun… but he had no way of knowing that she had a UTI. You will find that each specialist seems to be clueless about other causes for things besides what they specialize in.

gampiano

Hello,

UTIs can be very problematic in persons with dementia. They wreak havoc and cause all kinds of symptoms, behavioral changes, agitation, stiff joints and loss of muscle control. My DH had all of these symptoms with UTI. He was also put on an anti seizure drug being used off label for agitation and insomnia. This helped with sleeping patterns for awhile but also had other side effects . So, yes, always check for a UTI, and make sure there is a follow up lab test after treatment. As far as the other meds, they all have side effects and eventually it becomes a trade off , as you try to manage the patient during the different stages .

Marp

https://alzconnected.org/discussion/comment/197505#Comment_197505

Thank you for your response.

The neurologist knew about the possibility of a UTI because I brought it up. She agreed to order a test and seemed to understand how to coordinate collecting the sample with the memory care unit. She forgot to order the test.

In the meantime, I had also been in touch with my sister's primary care doctor who didn't know how to coordinate with the facility, but he made it work and put in the order.

Marp

https://alzconnected.org/discussion/comment/197506#Comment_197506

Thank you. If the doctor confirms my interpretation of the test and my sister does have a UTI, I will ask about a retest in a couple of weeks.

The behavioral issues and some of the cognitive issues have improved in the few days since we started the process of switching my sister to a new anti-seizure medication. Staff and some other residents (who are still observant and can communicate) have said my sister is doing better. She's less agressive, but she's still weepy & a bit more depressed than usual. So it's possible that she has two issues going on, both of which are contributing to her issues.

I just wish it were black and white so we could be certain.

ButterflyWings

Hi Marp,

The test you want can be done simultaneously, if ordered -- it is a culture that you want, specifically. Maybe they did one. If not, definitely ask for a culture when you have your LO retested. That way, what you'll get when the test confirms a UTI, is the added information to confirm what kind of bacteria is causing the urinary tract infection. This helps identify the best antibiotic to treat it to be sure it goes away completely.

I am sorry for the carelessness of that Dr. who did not order the test as promised to begin with. And it should be read immediately so the meds and relief can start. Having been through some wild times with my DH during a few UTIs, I know how every day makes such a difference in their behavior and suffering. It infuriates me that the sense of urgency isn't there for our PWD LOs with some medics. With one UTI my DH was eloping, climbing out windows, weaponing up, stashing steak knives and butcher knives under the mattress "to protect us" at night, peeing ALL over himself and the house -- it was just a nightmare that kept escalating.

It was the thing that ultimately caused me to switch his long time PCP. The skepticism that I (spouse caregiver) knew what I was talking about, and the casual "wait and see" attitude with not ordering a urine test with culture after 2 recurring UTIs, with dumb pushback like "well he doesn't have any symptoms so its not likely a UTI -- could be something else e.g. confusion can be caused by his Alzheimer's (as if I did not know the difference between his baseline and sudden major changes). And the excuse was given that he didn't want to risk giving an antibiotic unnecessarily as that could cause DH some medical issues (?).

It took me pointing out that DH is terminal so its not like they'd be risking his life, that I wasn't asking for a controlled or addictive substance, and that if my DH ended up with sepsis due to untreated UTI, they were willfully risking patient safety which is lawsuit worthy. Caregiver relief is something that doesn't even get considered, but it is important too -- the stress, worry, sleep deprivation and over the top extra caregiving duty that is required to help our LOs during a UTI...that is a side effect that I've never heard mentioned but it is very real. Anyway, good for you for continuing to advocate and get to the bottom of things. You get a virtual "great caregiver" medal today!

https://my.clevelandclinic.org/health/diagnostics/22126-urine-culture

harshedbuzz

@Marp

It could be a combination of the two. Or not. You may never know which is frustrating.

Are mood and behavior listed as common side effects of this particular medication? Is she taking the medication for seizures or mood? Is the previous medication something you'd rather she take? Is it more effective? Does it have fewer reported side effects? Is it cheaper? If so, I might discuss with the neurologist. If not and she does well on the new medication, I don't know that I'd worry.

One problem to seeing specialists is that you can run into a 10 Blind Men and an Elephant phenomenon-- where each doctor is an expert on a trunk, tail or ear but none knows the elephant as a whole. We jettisoned most of dad's specialists by the time he went to memory care. But like you, there was one we couldn't-- the pulmo. I suspect that's where you are with the neuro.

I would ask if, going forward, the MCF can test your sister at the facility proactively when behavior changes. Dad's MCF did this routinely.

My mom (no dementia) recently had a UTI-- Her first. It was stunning the toll it took on her. After the ER visit, I was concerned that I'd not asked for a culture based on guidance here. But about week later, the culture results hit her patient portal. Hopefully this happened for you as well.

HB

Marp

https://alzconnected.org/discussion/comment/197539#Comment_197539

The lab results show a culture was done, although I can't tell what bacteria might have been found. I just know they did a culture and there is some scientific mumbo jumbo about the result. Maybe it's nothing, but maybe not.

My sister was throwing things at people, yelling, swearing, banging on the wall. Since we started the switch to the new anti-seizure med, that behavior stopped. She's still weepy and doesn't want to eat, unless I'm there and she sometimes refuses to participate in activities - before she participated in almost every activity offered.

Marp

https://alzconnected.org/discussion/comment/197543#Comment_197543

She's taking the med for seizures and mood and behavior issues are a side effect for the first med she was on, especially for patients with Alzheimer's, although I see on these message boards some people with Alzheimer's do okay on it. My sister's neurologist just doesn't think my sister will.

Marp

https://alzconnected.org/discussion/comment/197505#Comment_197505

My sister's neurologist is a dementia specialist, and, given all the information out there that details how awful UTIs can be for Alzheimer's/dementia patients, I would expect she would be aware that my sister's symptoms can be caused by a UTI.

M1

The culture results typically take a bit longer to come back. The bacteria have to grow, be characterized, and then be tested for sensitivity to multiple antibiotics. This typically takes 2-3 days at least.

Marp

https://alzconnected.org/discussion/comment/197570#Comment_197570

According to the patient portal for the lab that did the tests, they did the culture. The doctor who finally ordered the UA is a VA doctor. I called his office and they said they didn't have the results yet. I checked their fax # and had the lab refax them. The lab said they didn't use the fax # the VA just gave me.

It's scary because this is the weekend and, if we can't get an answer today, my sister has to wait two more days to find out if a UTI is part of her issues. We had to fight for over a week to get someone to order the UA. Now we have to wait some more.

Iris L.

Ask for a culture and sensitivity--this checks that the antibiotic chosen will kill that bacteria, because there is much antibiotic resistance.

Iris

times2

https://alzconnected.org/discussion/68106/has-your-loved-one-ever-had-behavioral-cognitive-changes-from-both-uti-medicine

Often times in the elderly the only sign of the first sign of a UTI or respiratory infection is sudden cognitive changes. At the hospital where I work, any elder who comes through the ED with unexplainable altered mental status gets a urinalysis and chest X-ray. 9 times out of 10, when there’s no other symptoms, it’s one of these things OR a recent medication change. We automatically culture the urine if the UA is questionable for a UTI so that the right antibiotics are given to treat it but that can take 24-48 hrs. We typically start on a broad spectrum antibiotic and change to something else that whatever grows is most susceptible to.

Depending on the seizure med, her neurologist may not necessarily have jumped the gun because with the elderly there are so many medications that do not play nice with them. They may have a better option in mind.

Hopefully it’s figured out soon and your sister is on the mend soon.