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Caring for someone who is living with late-stage Alzheimer’s disease comes with a unique set of challenges. One of these is bowel incontinence, also called fecal incontinence. It can be frustrating, stressful, and confusing when someone loses control of their bowels. When there’s fear of having an accident, it can be hard to leave the house, even for just a few minutes.
Some myALZteam members have talked about caring for a family member with bowel incontinence. One shared, “My dear husband has now been having loose bowel movement accidents — very upsetting to him and a real downer for me to do the cleanup. This is limiting us from going out and having friends over.”
Another member said, “My husband’s accidents are infrequent but almost always away from home when he simply cannot make it to the bathroom. He has very loose stools, so the mess is horrible and embarrassing for both of us.”
Clearly, bowel incontinence has some serious ramifications when you’re caring for a loved one in the later stages of Alzheimer’s. If cleaning up feels overwhelming, consider local training programs or home health aides. Caregiver burnout is a real risk and can affect the quality of care your loved one receives.
Here’s what you need to know to understand and manage bowel incontinence incidents to keep both your and your loved one’s quality of life and sense of well-being high.
Alzheimer’s disease causes problems when the brain tries to process or understand signals it gets from the body. The critical failure is not a memory issue but a loss of the frontal lobe’s “stop signal.” This means that the person with Alzheimer’s cannot cognitively override a physical reflex, such as the need to have a bowel movement. Because of this, external prompting must become the brain’s replacement signal.
Problems with how the brain processes signals can make it hard for some people with the condition to know when they have to empty their bowels or to be able to find a bathroom fast enough once they do realize what’s going on. Memory loss and cognitive decline can also make it harder for them to remember where the bathroom is, even when they do get the right signals from their bodies. Most people living with Alzheimer’s will experience some sort of incontinence at some point in their journey.
However, other medical conditions or issues can cause bowel incontinence, too. Things to look for include:
Specifically, chronic constipation can lead to overflow incontinence, where liquid stool leaks around a large, hard blockage. This often looks like diarrhea but is a sign of a very serious blockage that requires immediate intervention.
Some of these common causes may be more likely to lead to urinary incontinence, but they can all cause odd and uncomfortable sensations in the pelvic area that can make bowel incontinence more likely. Issues like urinary tract infections are particularly likely if your loved one is dehydrated because they refuse fluids or forget to drink.
People might also struggle with bowel incontinence even if they’re getting signals that they need to use the bathroom. Additionally, if a person with Alzheimer’s can’t ask for help or feels embarrassed about needing assistance in the bathroom, they may have more accidents.
Even though bowel incontinence can feel uncomfortable and embarrassing, there are ways to manage it. You might not always be able to stop it from happening, but you can limit the mess bowel incontinence causes and help your loved one feel cared for, no matter what happens.
Start by talking to a doctor. They can help you figure out if bowel incontinence is happening because of Alzheimer’s or if there’s another cause. To make the most of your appointment, track the timing of accidents, bowel movements, and fluid intake for at least three days in a row. This is called an “elimination log” and provides the physician with the essential clinical data needed to tailor treatment.
Then, if there’s another cause, your doctor can provide medical help so you can find the best treatment for your loved one. If Alzheimer’s disease is behind your loved one’s bowel accidents, your doctor can help you find the best products that will help them, from special underwear to laundry detergent and more. If your loved one is refusing to use a toilet, your doctor may be able to help you come up with ideas that will help with that, too.
Be open with your loved one about bowel movements and use your words to help them keep their dignity when they do have an accident. Don’t scold them, but remind them that anyone can have an accident.
Ask your loved one regularly if they need to use the bathroom. They may only give nonverbal cues (such as restlessness or unusual facial expressions) or respond in ways that don’t have much to do with bathroom use, but you can still learn to interpret their needs a lot of the time. Set reminders for yourself to ask them about the bathroom or encourage them to try to go. The goal should be to see their bowel incontinence as an unmet need that you can learn how to meet most of the time, rather than as a problem.
Set up a routine for bathroom use. The routine will be different for each person based on their particular body and needs. You might remind your loved one to go every few hours or set up a routine where they sit on the toilet for a few minutes before or after certain activities.
For example, you could schedule bathroom visits for 20 to 30 minutes after a meal, which is when the powerful gastrocolic reflex naturally stimulates the colon and increases the likelihood of a successful bowel movement. Setting specific times can help them get used to using the bathroom regularly and may help put their body on a toilet schedule where they need to go at particular intervals.
Different people will have different ways of letting you know what they need. Some might get restless and move around a lot when they need to poop, while others might tug at the clothing on their lower body. Some people might get really quiet or even go hide somewhere when they need to have a bowel movement. It can take some time, but you can learn what your loved one does when they need to go.
Once you observe a cue, avoid asking, “Do you need to go?” Responding to that type of question requires executive function, which can be difficult for people with late-stage Alzheimer’s. Instead, use simple, direct, two-step commands like “Stand up” then “Let’s walk to the bathroom.” These simple commands don’t require complex decision-making and help initiate the required motor sequence.
Ensure that the bathroom is easy to find and get into, as well as safe for them to use. This can be as simple as leaving the bathroom door open, though some people prefer to put a picture of a toilet on the door so they can shut it. Inside the bathroom, it may be helpful to install grab bars, make sure pathways are clear, and create extra space for a walker or wheelchair.
To help with spatial orientation and prevent nighttime falls, you could install a motion-activated, low-glare night-light that illuminates the area directly around the toilet. If moving is a struggle for your loved one, a bedside commode next to the bed or chair they regularly sit in might be easier to get to than the bathroom.
Accidents will happen, and wet wipes can be a huge help when they do. They’re great for wiping your loved one, as well as anything else that gets messy. One myALZteam member carries a whole clean-up kit. They explained, “I also have a bag that just has the disposable underwear, wipes, floor pad, gloves, and a trash bag.”
Having these supplies on hand can make a messy, difficult situation easier because you’re already prepared for it. When living with incontinence, it’s very important to prevent incontinence-associated dermatitis (IAD), a painful inflammation caused by prolonged skin exposure to stool. To help prevent IAD, remember to follow this process: Cleanse the skin gently, pat it dry completely, and apply a zinc oxide barrier cream to seal the skin.
If your loved one has lots of accidents, getting disposable, absorbent underwear that’s made to handle bowel accidents can make a huge difference. While you’ll still have to clean up your family member after an accident, disposable underwear can keep it from becoming a bigger mess.
Many myALZteam members use these. One said, “My husband wears Depends. Actually, I put two on him in the morning. When the one closest to his skin is wet, I can tear it off, and he still has a clean, dry one on.” Another added, “Once my husband had his first accident and it embarrassed him, we switched to Depends.”
You’ll likely still need to check your loved one regularly, even if they’re wearing absorbent underwear. Your loved one can develop skin issues if they stay in wet or soiled absorbent underwear for too long, and they need to be kept clean to stay healthy. Additionally, incontinence pads or briefs may not be able to hold all bowel movements, so it’s a good idea to still be prepared in case accidents happen.
On myALZteam, people share their experiences with Alzheimer’s, get advice, and find support from others who understand.
What have bowel incontinence challenges been like for you as a caregiver? Let others know in the comments below.
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