Caregivers or care partners are often surprised when their loved one with dementia suddenly becomes irritable, nasty, even physically violent. A bladder infection, also known as a urinary tract infection, may be the culprit.
Where Did THAT Come From?
You knew that being a care partner was going to have some challenges, but today..???? Your loved one is an absolute nightmare! Nothing you do is right, everything is stupid, you are a rotten (insert relationship here–daughter, son, wife, husband, etc.), they would be better off dead or in a nursing home. And you find yourself thinking, “Sounds good to me” before you catch yourself and a tsunami of guilt engulfs you.
What. The. Duck. Is this how it’s going to be from now on?
Always Look for a Physical Reason for a Sudden Behavior Change
Any infection can create a more confused state called “delirium.” People with dementia are at high risk for delirium. Delirium can, and does, occur on top of the dementia. Think of it this way. When your body is dealing with an illness, even something as minor as a head cold, you feel yucky. Your thinking gets fuzzy. You just want to take a couple of shots of some funky-tasting medicine and go to sleep for 12 hours. Your body is so busy mobilizing its resources to fight off the infection that some of those resources get pulled away from thinking/concentrating duty. A person with dementia already has fewer neurons handling thinking/concentrating/memory, so if the body pulls away even more…you get WORSE confusion. And, a giant upswing in generalized irritability–which can morph into some really nasty verbal barbs and, unfortunately, escalate over time into physical assaults.
Because bladder infections (also known as urinary tract infections or UTIs) become increasingly frequent as people age, these infections go to the top of the list. Call your primary care provider and insist on being seen TODAY. You will initially run into a well-meaning front-line receptionist whose job is to “triage” the calls to determine if you REALLY need to be seen today or if you are just over-reacting. Unfortunately, some of the questions they ask (and the answers you provide) may move you to the “not urgent” list because the receptionist has not been fully trained about the workings of older adults.
Getting into the Provider’s Office (or How to Deal with the People on the Phone)
When I was a nurse practitioner student, I worked in a very busy family practice site in north Philadelphia. This was before gentrification; north Philly 22 years ago was brutal. I used a padlock and chain under the hood of my car to prevent my battery from being stolen. I fielded tons of phone calls from people needing to be seen TODAY and RIGHT NOW for a variety of issues. Chest pain and drug overdoses were easy: “Call 911. Now.” But some of the other concerns required me figuring out if the situation was truly medically urgent or something else. So I get it…I’m not dissing those folks who have to make these decisions.
The front line person will ask you questions such as:
- What is your loved one’s temperature?
- Is he or she having pain with urination?
- Is he or she having pain below the belly button?
- Is he or she urinating frequently?
- Does the urine smell bad?
A 30-year old with a urinary tract infection will probably report a temperature of 99 degrees Fahrenheit or higher and “yes” to all of the questions. But an 80-year-old with dementia? Or even a 63-year-old with early onset Alzheimer’s Disease or FTD? Not likely. Because the front line person is not versed in how UTIs present in people with dementia, the person may believe that your concern is not urgent and may instead schedule you for an appointment in 3 days. Or next Friday. Uh…no. If this bladder infection is not treated, your loved one can become seriously ill and die from a general body infection called sepsis.
What Number Means “Fever” in Older Adults?
The 98.6 number for “normal” body temperature was obtained by measuring the oral temperature of a couple hundred medical students (aged 21-25) and averaging it. This means that some of us have “normal” body temperatures that may be 97.6 degrees or 99.6 degrees. Our temperatures also fluctuate during the day, being lowest very early in the morning and highest in the early evening. So how would you know YOUR normal temperature? Take your temperature at the same time every day for three to four days, when you are feeling healthy. That is your baseline temperature.
The same should be done for our family members with dementia. Take their temperature every morning (before drinking a hot beverage or smoking a cigarette–both falsely raise the temperature reading) for 3-4 days. Average it. You now know their baseline temperature. I’ve cared for older adults with baseline temperatures as low as 96 degrees Fahrenheit. Do you see where I’m going with this?
Back to the front line person answering the phone. Your dad’s baseline temp is 96. Today, it is 98.6. What the front line person does not know is a 98.6 temperature for your dad is really a 100 degree fever!
This is where you have to become really assertive and explain this to the person answering the phone.
Or, respond that your dad’s temp is 100 degrees and then deal directly with the provider once you see him or her. I hate to advocate fibbing but I’ve done exactly this when I knew that the front-line person was unable to comprehend the situation.
What About the Rest of the Questions?
Sometimes, the person with dementia will complain of pain in the lower abdominal area. Sometimes, you do notice that he or she is getting up to pee every 10 minutes. However, depending on the extent of the dementia, and if the person is incontinent of urine, the answer to the questions may be “no.”
You are probably thinking, “But how do I answer the bad-smelling pee question?” Well, there is “normal” urine smell, which is ammonia-ish. Then, there is the really STRONG ammonia smell that happens with concentrated urine because of dehydration. When you urinate first thing in the morning, that is what concentrated pee smells like. Finally, there is an even stronger, yuckier smell that screams “infection.” I cannot describe it but if the urine from your loved one does not fit category 1 or 2, you may be dealing with option #3.
Cool, We Got Into See the Provider! Now What?
The provider is going to ask for a urine sample. Someone will use a specially treated “dipstick” to check for evidence of a UTI. Caution, though: these dipsticks are SCREENING tools and only accurately identify infected urine about 70% of the time. The nice thing is that they are immediate and if there is evidence of an infection, the provider can prescribe antibiotics while waiting for more laboratory work. The urine should go off to the laboratory and receive a more accurate analysis. If the laboratory results indicate an infection, the next step is something called a “culture and sensitivity.” The results from this procedure will tell the provider which antibiotics will be effective and which ones will not. Culture and sensitivity analyses can take at least a day or more, depending on the laboratory.
Once the UTI is treated, you should see a “clearing” of the behavior. The time it takes for the person with dementia to respond, and for the mean, nasty behaviors to go away, varies from person to person. I’ve seen improvement in as little as 24 hours and as long as a week.
It’s Been Over a Week and the Behaviors Have Not Changed
One reason may be that the provider prescribed an antibiotic which may not be effective. Call the provider and ask about the sensitivity results. The provider may need to switch antibiotics. Another reason may be another underlying health problem. Get your loved one back in to see the provider and have a more extensive examination.
I Do NOT Want to Go Through That Again! How Do I Prevent UTIs?
- Hydration, hydration, hydration. I am not going to give you an amount–look at the urine. Urine from a person getting enough fluids is a light yellow. Encourage non-caffeinated fluids, preferably water, all day to keep the urine a light yellow.
- Spot-check bathroom habits. As the dementia gets worse, people forget some basic care activities. Women may forget to wipe from front to back and may do the opposite.
- Support continence. People with dementia start to lose motor function, meaning that they will stand up to go to the bathroom but can’t make their feet work. Or they may get lost going to the bathroom. Assist your loved one to the toilet every 2 hours while awake. Don’t ask, “do you have to go?” because the answer will be “no.” Read this blog for handling refusals or creatively getting someone with dementia to go to the bathroom.
- Change adult diapers every 2 hours. Adult diapers contain the same hyper-absorbent materials found in baby diapers. This is NOT necessarily a good thing. I’ve seen family caregivers try to save money by changing the adult diapers once every 8 hours. I’ve also seen family caregivers overwhelmed by the care recipient who will NOT cooperate with removal, so the caregivers “pick their battles” and only change the soiled diapers a few times a day. Even though the urine is being absorbed and the odor may not be that noticeable, the bacteria living on the skin now have a warm, moist, dark environment to thrive and prosper in. The growing, thriving, happy bacteria are capable of moving up the urethra (where the urine travels after leaving the bladder), up into the bladder, and setting up a new home–and another bladder infection.
- Cranberry juice, powder. There is a solid body of evidence that cranberries can protect against UTIs in child-bearing women prone to uncomplicated bladder infections. The results of studies that included older adults have been inconclusive. The ideal “dosage” of cranberry juice, or concentrated powder available in capsules, has not been determined for older adults or persons with dementia.
Helpful Hint: Talk to Your PCP About a Urine Collection Kit
One of the frustrating aspects of taking your loved one into the primary care provider’s office for a urinalysis is GETTING the urine sample once you arrive. You may want to ask your PCP for the following to keep at home, so that you can obtain a urine sample and bring it with you when you and your family member go to the office. Please discuss with your PCP specific steps for properly storing the sample if an hour or more would elapse before you could get the sample into the office.
- A urine “hat” that fits in the commode to assist with urine collection.
- A plastic container for pouring the urine from the “hat.”
- Cleansing wipes
- A copy of directions for correctly collecting a clean urine sample
What About Over-the-Counter Urine Dipsticks?
It depends. The majority of the over-the-counter dipsticks are designed to only check the level of white blood cells in the urine and the nitrate level. The dipsticks used by clinics and physician’s offices look at more measurements, such as blood in the urine. Those “urinalysis reagent strips” can be purchased on line.
Personally, I prefer to SEE patients and evaluate the situation myself in addition to obtaining urinalysis results. I do recognize that there are situations where getting the person with dementia to a provider may be nearly impossible for a variety of valid reasons. This is a conversation best had between you and your loved one’s primary care provider.