My last two blogs and podcasts have focused on bowel and bladder issues. Pee and poop are big deals. Nobody wants to clean up pee and poop accidents Pee and poop accidents are embarrassing for the person living with dementia, especially in the moderate stage when the accidents begin to appear. Pee and poop accidents can be overwhelming for the carer. Incontinence products are also very expensive! Learn how to prevent accidents and keep the person living with dementia continent for as long as possible!
Dementia Worsens Existing Continence Problems
Pee accidents do not happen all at once. The first thing to know about the person living with dementia is, are there pre-dementia problems with urine? By this I mean, did the person have stress or urge incontinence before the memory problems? Women who have had children and many women after menopause may report different types of incontinence, and some have “mixed” incontinence. Some women can fix the incontinence doing Kegel accidents or taking anticholinergic medications like oxybutynin. However, anticholinergic medications are associated with memory problems because these medications can lower acetylcholine levels in the brain.
Dementia Medicines Can Worsen Incontinence
People with mild dementia from AD, vascular dementia, and lewy body dementia are often prescribed a medicine that increases acetylcholine in the brain. This is the same chemical that causes urinary bladder spasms. Using donepezil or rivastigmine could make pre-existing urinary incontinence worse. One option is to switch to a bladder medicine that does not involve anticholinergic activity, like mirabegron (also known as Myrbetriq).
Understanding the Brain Changes that Create Accidents (Incontinence)
As dementia progresses, parts of the brain responsible for logging in all of the sensations, including that of a full bladder, can shrink or connections between the sensation part and the motor part can be lost. The brain is really made of two parts==the outer part, or cerebral cortex, which is where a lot of the understanding and doing happen. Then there are the white matter “highways” that connect the different parts of the cerebral cortex. You can think of the cerebral cortex as departments with specific jobs, and the white matter as phone lines or internet connections that allow the departments to send messages to each other. When the cerebral cortex breaks down, individual departments are gone—literally downsized. This does not happen all at once. The departments lose a person here and there until nobody is left. When the white matter breaks down, it is like the internet becoming unstable. The bandwidth keeps shrinking until none of the departments are able to get a decent signal. You basically have departments losing people while at the same time, the internet connections are getting slower and slower until they cease to exist.
These changes, which happen over time, contribute to pee and poop accidents—urinary and fecal incontinence. Earlier in the dementia journey, the affected person has trouble finding the bathroom. He or she then loses bladder control because they arrive at the bathroom “too late.” Or, they urinate/defecate in something other than the toilet because this option, in their reality, is preferable to soiling themselves. Carers can help by keeping the path to the bathroom clear of obstacles, keeping the bathroom door open while closing the other doors, and keeping the bathroom light on at all times—even during the day.
Life Hacks to Prevent Pee and Poop Accidents
Going back to the example of the shrinking brain as losing departments and experiencing slower internet connections, the first two things are to compensate for these losses. By that, I mean replacing difficult to remove clothing with easier to remove. Perhaps swapping out jeans that involve buttons and zippers with denim pants that have elastic waistbands and only have to be pulled down. Same for undergarments.
“Highlight the Bathroom”
Next is “highlighting the bathroom” which means making the path to, and the actual bathroom, naturally stand out. The first step is simplifying the environment. Keep the path to the bathroom easy and direct–move furniture if you have to. Next, declutter the bathroom because too much stuff can distract the person living with dementia. Many people, myself included, have cluttered bathrooms. I have vials of face cream all over the counter, plus all of my contact lens stuff. I also have bathroom mats and rugs. It is important to keep the bathrooms decluttered—just have the minimum stuff accessible. A handtowel and a soap dispenser on the counter, that’s it. Also, get rid of the bathroom rugs that can serve as a tripping hazard. As I indicated earlier in the blog, I recommend keeping the bathroom light on and the door open, at a minimum during the later afternoons and evenings.
Stay Alert to Subtle Changes
When you live with the person, it is hard to see the small but accumulating changes that indicate a person living with dementia is having problems with urinary and fecal continence. Be on the lookout for evidence of incontinence, like soiled underwear hidden around the house or the smell of urine on the person. This may also indicate problems with cleaning up after using the toilet. Look at the person’s fingernails—you may start to see poop under the nails because of problems wiping or washing hands after going to the bathroom. You may also notice more agitation or irritability when the person starts walking around the house. He or she is looking for the bathroom and may be too embarrassed to ask you where it is. Or, they are absolutely certain the bathroom is the first door on the left. Perhaps that was where the bathroom was located in a previous dwelling, but not in the current dwelling. As a result, the person may be surprised when they walk into a closet, or a bedroom or den, instead of walking into the expected bathroom.
Kindly and Respectfully Taking Charge
When these situations start to arise, you can take a more direct…yet respectful…approach, which can modify based on your relationship to the person living with dementia, and your knowledge of their personality and preferences. For example, when you see your loved one roaming around the house and it looks like they are looking for something, you can gently direct them to the bathroom: “Mom, the bathroom is on your right.” Or, you can get up and say, “I think you are looking for the bathroom. I can help.” Be kind and matter-of-fact. This is scary and upsetting for the person living with dementia.
Once the person is in the moderate to severe stage (this is where the person is also having problems with dressing and bathing/showering), you will need to prompt the person to use the bathroom. Again, be kind and direct. Do not ask, “do you have to go to the bathroom?” Instead, say “Let’s go to the bathroom” or “Come with me.” I find that some people do better with me simply holding out my hand and smiling when I say, “please come with me.” A toileting schedule is necessary at this point. The person may feel the need to empty their bladder or move their bowels, but the thinking is so disorganized they are unable to coordinate all of the steps involved with getting up, walking to the bathroom, lifting up the lid/seat, removing clothes, and peeing/pooping.
Can people forget how to pee and poop if they are not helped?
I believe so. Every time a person living with dementia does something, even something as basic as walking, all of the brain cells involved in the activity “fire” and exchange chemicals with each other. Brain neurons stay healthy by giving and receiving brain chemicals (called neurotransmitters). If I stop taking a person with dementia to the toilet, and I allow them to pee/poop in an adult diaper, I may speed up the decline. This is why I completely lose my shit (no pun intended) when I hear nurses in hospitals and long-term care settings tell a person with dementia, “just pee/poop in your diaper.” Not only is that disrespectful and f*cking gross, it accelerates fecal and urinary incontinence.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.