Chronic UTI and dementia.

You might want to follow up closely on the care she is getting / not getting in the Assisted Living facility! This was a constant problem with my father-in-law during his stay over the past year, and we found that he was just not being showered / cleaned well. They would not being changing out his underwear / depends when they would be soiled or even leaving him sitting in wet bed sheets until they were ready to help him. Sounds awful, but this does happen! Once we decided to bring him home under Hospice / Home Healthcare Agency they stopped occurring!

YourgirlCindy.....Hi, and thanks for your input. I will say she's getting excellent care. She's on Hospice pallative care, and they are very good to her. They are onsite at her assisted living facility from 6AM til 7PM daily. I know at a lot of places what you described goes on. I'm there a lot to see what goes on, so I feel her care is good. Although, none of the are perfect. Take care and I hope your father-in-law is doing well.

I have had this problem and it seems to me that the area at the urethral opening gets irritated and then the infection starts. I tried many creams and very good hygiene but it still was a problem. Then I remembered that Vaseline helped with suppressing the organisms in a previous skin rash behind ears etc. (from eating too much sugar!!). It suffocates the organisms and gives the area a chance to heal. All other creams seemed to feed the wee devils. It seems to be working to keep away the UTIs for the moment anyway. I was a nurse, am 78 and have had 6 children so the tissues there get a bit degenerate I think and cannot protect themselves so well.

LT...thanks. That's good to know. I'll pass that along to her caretakers.

Hi kihinshaw... My Mom has the same problem... We have actually done some testing to check on what is causing this... I was concerned that her bladder had prolapsed, but it hasn't . We also had a CT to check her kidneys, the structure is fine... SO I have chatted with her about cleaning herself carefully, and also drinking more. I got her cranberry juice, real cranberry juice and I do think it helps some... She is taking a medication at night, it seems to be helping some! My Mom also has some dementia... It is just HARD!!! take care...

My Mom who is 85 had this problem with on going UTI's even when I get her to shower daily. There was one day when she got up and got dressed before I could get her in the shower and sure enough a few days later she had another UTI. She does not have dementia but has suffered from depression through the years. She is not fastidious about hygiene and will sit in wet Depends. She does not notice a bit of a poop stain on her pad which I believe then creates growth of bacteria for a UTI. I make sure she showers daily and it has helped immensely. I have to encourage her at times to get up and change her pads which is an uncomfortable thing to tell my Mom but I just tell her it keeps her well and out of the hospital. Her doctor suggested putting her on a low dose of antibiotics and so far she has had no adverse affects from this. He said it has worked with many elderly people in keeping infection at bay. But I do make sure she eats yogurt and takes probiotics to keep good bacteria in her stomach other wise they can quickly develop diarrhea. Who ever thought we would be dealing with these intimate details with our parents? It's an education for all of us. We have to be proactive even with the doctors, sometimes they don't think to ask pertinent questions or take urine samples.

I understand sparrow it is like the role reverses and I am not totally comfortable with that...My Mother is extremely stubborn and it has become worse... I miss MY Dad so much she would listen to him!!!

There is a nightly pill to prevent UTI's so they never return, please get to a specialist asap, or call.

@Reverseroles, could you share the name of the 'nightly pill to prevent UTI's' you mentioned?

Yes, please share.

@Reverseroles, my mom also has chronic UTI's and mild dementia. Outside of low dose antibiotics and probiotics I have never heard of a "nightly pill" for UTI's. Please, what are you referring to? This is a common problem among the elderly and we could use the help!

Ok everyone, I will get the name of it and post is because its my Moms 1 year old neighbor. My Mom takes a 250 amox daily to prevent UTI's but there is something else. I will get back asap!!!!

Did anyone ever say what the name of the nightly pill was to prevent UTI's.

UTIs are the number one cause of false admits to psych wards for geriatric women. It is a terrible problem but now that you are aware of it, you should share this fact with her as it can calm her down. She is probably wondering what is going on and knowing that it is a passing infection (even though it is chronic) will likely make her feel better.
Interestingly, one of the ways the UTI-induced psychosis/dementia manifests itself is a feeling of being relocated. I had a client who kept wondering why all the rooms looked the same. In fact she was in the same room all along but was sure that she was being put in different rooms that all looked the same. I know this is small solace but at least you know what is causing the dementia/psychosis. Stay on top of the doctors to be sure to get her the antibiotics as soon as possible. Best of luck to you.

agingconsultant......that is very interesting. What you describe fits my mom to a T. Are you in the medical field? I will be showing this to my mom's Hospice caretakers. It's so frusterating......how does one know if it's the dementia or UTI????

Kjhinshaw,
I am glad that I can help. I am not in the medical field but work as a consultant to the elderly and their families, helping them organize for the transition to old age. The first thing I would do, if I were you, is tell your mom about this. It will likely reassure her greatly. It is one thing to suffer from dementia but another to experience dementia or psychosis as a side effect from the UTI and the latter is much less disturbing to most elderly people since it doesn't mean that they are losing their minds but instead having a side effect. Let me know if the people at the assisted living facility are not familiar with this phenomenon so I can send you some studies to share with them.

I am afraid I don't know any really good solution to avoiding her getting the UTIs but I would definitely have her thoroughly checked out by the appropriate specialists and make sure that her doctor is not stingy with the antibiotics.

Good luck to you.

Kjhinshaw,
Below is a citation to, a quotation from, an article that lays out the problem and provides some medical back up in case the ALF is dismissive. If you look on the internet, you will find lots of articles noting the correlation and the fact that many people are unaware that UTIs may appear as dementia.

from: Doctor raises awareness of link between dementia, urinary tract infections


"The connection between dementia, which includes Alzheimer’s disease, and urinary tract infections is not as widely understood as it probably should be, said Dr. Rajesh Tampi, director of psychiatry for Masonicare.

The link between dementia and urinary tract infections was made nearly 20 years ago, and while general awareness is improving, “it should be better,” said Tampi.

“Information should be spreading faster, but it’s not caught up that much.”

Lack of attention to hygiene, which those with dementia can be susceptible to, is a more obvious link to the risk for infection.

But, particularly in older people, the symptoms of a urinary tract infection can often be misidentified as a sign of dementia, said Tampi.

A significant difference between the two is that confusion brought on by an infection will come about much more quickly than the confusion resulting from dementia, a much more slowly progressing affliction.

“There are very few dementias that are rapidly progressing,” said Tampi. “Nobody gets dementia in three days to a week.”

Bacteria infecting the urinary tract also seep into the blood stream. Blood vessel walls weaken as people age, and vessels in the brain become more permeable, thus the link between an infection and increased confusion.

So if an older person is displaying signs of confusion, it isn’t necessarily connected to dementia. Other conditions that can lead to a more sudden onset of confusion in the elderly include strokes, pneumonia and a change in medications.

Tampi said 25 percent of the patients admitted to the psychiatric unit at the Masonicare Health Center have urinary tract infections. Older women are at higher risk, he said. It’s important that older patients receive a complete medical work up to help identify the causes of problems, he said."

agingconsultant....thanks so much for the info. I do know the medical staff at the ALF and Hospice are aware that the UTI symptoms mimic dementia. Of course since I'm around my mom so much, I'm usually the first one who picks up on it, and let them know, then we start with trying to collect urine for testing. This alone can be hard because she in incontinent a lot of the time, plus if she knows she needs to drink lots of water and pee, she gets so full of anxiety it can take days to get the sample. The doctor is very good about keeping her on antibiotics. She will complete the round and a week to 10 days later she's showing the symptoms again. This last time it seems the confusion never really lessened, and she's been really bad the past couple of weeks. They seem to think her dementia is getting worse. We are once again trying to get another sample. The next time I'm with her and she starts in about being moved, and sleeping in different places I'll try telling her what's going on, but I'm not sure she'll accept it because she's so certain it's real. But, I'll try anything! Thanks again for taking the time to post this information. I appreciate it so much. I just got another phone call from her and she's in another state of confusion. :-)

I am so sorry. I don't know of any solution to the displacement confusion. I tried hav ing people hang up specific pictures or even drawing an "x" on the wall but she just thought they had been moved or noted how amazing it was that there was an "x" on this wall too. Your best bet is to catch her when she is lucid and explain it then. Also, many can tell the UTI is present by the smell or color of the urine. It is very very frustrating to have her wait so long before getting treated again. If it is any solace, now is the time to get some down time to yourself since she will not remember what is going on and there is really nothing you can do other than get her tested asap. Also, as I am sure you are aware, sundowning makes things so much worse and that can start in the early afternoon.

Ay yi yi. I wish you all the best.

agingconsultant.....Thanks again, and yes, all of what you're saying is exactly what is and has been going on. Even with all of her things, photos, etc. she still thinks they move all this stuff to different places. If I explain it when she's lucid, it makes no difference. In her mind it's real. Through all of this, I've learned the mind is a "crazy" thing. :-) Thanks again and have a great day!

That is some great information you posted agingconsultant! My mom also suffers from chronic UTI's and mild dementia. It is getting nearly impossible to know whether it is a bad spell of her dementia, or another UTI as they mimic each other. I don't know if I agree with you about trying to explain to kjhinshaw's mother about her having a UTI. I have tried to explain to my mother how I know when she has a UTI, but she just doesn't believe me. She has no burning sensation, fever, or any symptoms like that which would make sense to her. Her personality changes, memory worsens, she gets easily agitated, cannot concentrate, can't find words, in other words, sounds like dementia. If I try to explain to Mom what symptoms I see, she thinks I am making it up, or I am nuts.

Susie, does the dementia diminish once the UTI is treated? If so, that is when I would talk to her about it. Not everyone is eased by knowing that the UTI, not dementia, is causing the disturbing behavior. However, some people find it a relief since they are more afraid of losing their mind than having a UTI. But I can't imagine that you could get too far having such a conversation while she is in the throws of the UTI. All in all, I have found most elderly people like to be told what is going on with them, particularly when they have difficulty holding onto reality. It is a tough road but it sounds as though your mom is lucky to have you.

agingconsultant
The the UTI symptoms ease back when treated. I have tried talking to her about her UTI's in her lucid periods. She really cannot understand what I am talking about. She doesn't "feel" the confusion or forgetfulness. She doesn't "feel" that she is more agitated or emotional. I liken it to when a person is ill with a high fever. One really isn't aware of how sick one is, and doesn't remember all that went on.

I see. Thanks for sharing your experience. Best of luck to you and your family.

Susie,
Your mom sounds just like mine. I think even if I try to explain to her when she doesn't have the confusion, she also will not believe there was ever anything wrong with her. And when she is in the confusion, trying to explain anything to her is impossible. She won't even believe how sick she was a couple of years ago when she almost died, and this began. She says if she had been that sick she'd remember it! :-) I'm pretty sure my mom has yet another UTI because she's really bad right now. Calling me 3-4 times a day with all sorts of crazy stuff. Does your mom seem to get the UTI soon after she takes the round of antibiotics? I'm beginning to wonder if my mom's UTI ever really clears up. I'll tell you one thing.......I'm about ready to get a one way ticket to Maui! :-) I feel like I'm going nuts myself. Take care.

kjhinshaw,
Yep, they are two peas in a pod. I did finally take my mom to a urologist last summer. We found that she is not emptying her bladder completely when she goes to the bathroom which means bacteria stays in there and causes infection. Common problem, but I don't know what one can do about it. That might be the cause of her UTI's along with her poor hygiene (not taking showers for days on end even though she thinks she has). She has not had a UTI since mid-summer, that we know of, and the only thing I can think of that is different is that the urologist prescribed a daily probiotic and changed her daily low dose antibiotic to 100mg of Trimethoprim, which was never tried by her primary care docs. I take her back there over the holidays when I am visiting and we will find out for sure if she is UTI free.
In my investigations of UTI's, the one thing I have been told over and over is that drinking plenty of fluids is the key to getting rid of these things. Tough to do with the elderly. They lose their sense of thirst and don't want to drink anything. In my Mom's case, she *thinks* she is drinking 8 glasses of water a day when in fact it is more like 12 ounces plus 12 ounces of milk and a cup of coffee, which doesn't count towards liquid intake.
I understand about feeling like you are going nuts. We love our Moms and we worry and stress about their dementia. The hard part is our friends and family get tired of listening to us vent about it. I understand that. This site has been a godsend to me. It may not give me definitive answers, but I can read others experiences and see that many other folks are going through the same things, or worse than I. Somehow this site has destressed me. The problems with Mom are still there, but I find I am better at dealing with her now, and I am less stressed. Family doesn't have to listen to me carrying on about my worries so much any more.
That said, Maui sounds lovely....ahhh....if only......nice pipe dream :)

Susie,
My mom also doesn't drink enough water. I buy her the little 8 oz bottles so she can hold them, and I bet she only drinks 2 a day. Everyone is always on her to drink water. Sh tries but she really doesn't like it. Like your mom, she thinks she's drinking water all day long. I recently got her some Gatorade and she seems to like it for a change.

She was also on a daily antibiotic for awhile, but it didn't seem to do any good at all. She still got the UTI. I feel like she's kept pretty clean. She gets showers 3 times a week. I know the aid who showers her said she makes sure she's kept clean down there, but who knows what really goes on. Most of the time she's incontinent, but they do seem to come pretty quick when she presses her call button. She usually can't hold it long once she gets the urge.

I know what you mean about those around us getting tired of hearing about this all the time. I have a great husband who's been amazingly helpful and understanding, but I know he's getting tired of it all. He never complains, but does think I should take more time for myself. That's hard to do though. I feel so consumed by her 24/7 even though she's in assisted living.

Like you said, there are so many on this forum that have it soooo much worse. I don't know how they cope. I'm at my wits end, and it's not nearly as bad as most. I feel some better just knowing there are a few others like you who are having some of the same exact issues.

They just took another urine sample today, and I'm 100% sure it will show another UTI.

Thanks for your responses. Take care of yourself, and I hope all goes well for you and your mom on your visit over the holidays.

Right back at you, kjhindshaw.

kjhin...I dont understand the 3 showers a week, why doesnt she get them every morning, I never heard of such a thing? My Mom lives with me and gets one every morning. At night I also quick wash her with the warm water peri bottle with rinse free soap spray also and dry her well. She takes a 250mg amox daily and it keeps hers hasnt returne. (knock on wood) IF I were you, I would wash her myself to see if this stops it. I have trained many aides who have no clue that they arent washing, rinsing and drying properly. (nor do they care) My Moms dr said she only needs 20-24 ozs a day and we get it in with decaf coffee, decaf tea, and prune juice. For some reason I can get her to drink better if its warm. Good Luck!

Susie and kjhinshaw... I am with you, my has been having chronic UTI for some time now... We have done testing and numerous rounds of antibiotic... Often I hear this, "I just don't feel good" and then I know I am going to hear I was up and down all night!!! I have done some investigating, and found out that orange juice irritates the bladder, so we just have cranberry juice now, the real cranberry juice not the cocktail... Also I encourage her constantly to drink more water!!! It seems to be a concept she does not get... bless her heart!!! take care ladies...