Living with dementia


Toileting and incontinence

Dementia affects every part of a person's daily routine, including bowel and bladder control. A person with Alzheimer's disease may have accidents, soiling himself (fecal incontinence) or wetting himself (urinary incontinence). Our brain sends messages letting us know when our bladder or bowel needs to be emptied, but, with dementia, we may not receive these messages, or we may lose the ability to recognize the sensations.

Incontinence can be intensely embarrassing because going to the toilet is something we learn at such a young age, and losing that control can be degrading. It is therefore difficult to accept help in this intimate area of a person’s life, particularly from someone who is close to the person.

Why is someone incontinent?

Start by exploring the possible reasons for the accident. Finding a specific cause for the problem will guide your solution or prevention strategy. However, the reason for an accident in one situation may not apply in others. Patterns may become clear if you keep a diary, noting what happened just before, or at the time of, an accident. Keep in mind that, due to the disease process, no matter what strategies are used, accidents can still occur.

Consider the person

  • Is there a medical problem that should be treated, such as a bladder infection, constipation, loss of bladder tone, weakening of control muscles, decreased bladder capacity or, for men, prostate problems?
  • Could she be drinking large amounts of coffee, tea or colas, or taking medication that might be contributing to a frequent need to go to the bathroom, thus increasing the risk of an accident?
  • Is urine released with the pressure of a sneeze, cough or laugh?

Consider the disease

  • Is he able to communicate his need to go to the toilet?
  • Can she understand the message that her body is sending that it is time to go to the toilet?
  • Is he able to find the bathroom? Can he recognize the toilet, or could a wastebasket be mistaken for the toilet? Does his confusion increase at night, requiring an adaptation to the environment, such as a night light?
  • Is she able to undress in time?
  • Is the task too complicated? Is he able to go through all the steps, for example, finding the toilet, undressing, etc.?

Consider the setting

  • Is the bathroom too far away?
  • Is it difficult to get up from a low bed or a deep chair?
  • Is there privacy in the bathroom?
  • Are the bathrooms and hallways well lit?

How do people react when they are incontinent?

Some people who are incontinent may be upset and embarrassed, but others may not be. In the later stages of dementia, he may try to hide the evidence, by removing wet or soiled clothing and hiding it, or by wrapping feces and try to throw it away. See your doctor if incontinence continues, there could be an infection.

What to try

If you can find a reason for the accidents, it becomes easier to find an approach that will help prevent them in the future. If, despite your best efforts, you are not able to determine a specific reason, try the following strategies:

Around the house

  • Make the toilet easy to find. Clearly mark the path on walls and/or floors; ensure that there are no obstacles; label bathroom doors with words or pictures or both.
  • Use a contrasting coloured toilet seat. Coloured tape around the perimeter of a toilet or coloured water may prevent accidental misses due to perceptual or visual losses.
  • Use a commode or a urinal in the bedroom.
  • Put lids on waste paper baskets and other containers that may be mistaken for toilets.
  • See if the mirrors in the bathroom are a problem: she may feel like someone else is in the room.
  • Remove any obstacles in the way in the bathroom, for example, plants or wastepaper baskets, so he can get straight to the toilet.
  • Leave the door open to the bathroom when not in use.

What the caregiver can do

  • Watch for visible cues that the person needs to use the bathroom. For example, the person may get restless, make unusual sounds or faces, or pace around the room.
  • Give her simple instructions.
  • Give reminders to go to the toilet regularly, e.g., every two hours, in the morning upon getting out of bed, at bedtime or before going out.
  • Choose easy-to-remove clothing, such as Velcro closings or elastic waists.
  • Direct him to the front of the toilet before removing clothes.
  • For men, try putting a decal inside the toilet bowl to have something to "aim at."
  • Give a cue to get started, such as running water or certain words. Try to ensure that the bladder is completely emptied.
  • Leave her alone if she prefers, but stay nearby. You can tell her that you are "just outside the door if she needs anything."
  • If staying seated is a problem, distract him with favourite items to look at or hold.
  • If incontinence during the night is a problem, make sure she doesn’t drink too much just before going to bed. But do not withhold fluids during the day.
  • Make sure he uses the toilet before going to bed.

For safety's sake

  • Provide good lighting.
  • Install hand rails beside the toilet to make sitting down and getting up easier.
  • Install a raised toilet seat, to make getting on and off easier.

If accidents continue

Once you’ve determined that there are no medical or medication problems causing the accidents, some of the above ideas might keep her dry and clean. If accidents continue to occur, products such as disposable underwear, incontinence pads, panty liners (for women) or protective bedding might be helpful. These may be useful at certain times or in specific situations. Use them only if necessary. Even when wearing pads, take him to the bathroom on a regular basis.

Incontinence can lead to skin irritation and make him feel uncomfortable. If clothing becomes wet or soiled, help him to change right away, wash with mild soap and warm water and dry afterward. Then provide dry clothes.

Day to day

In the event of an accident, it is important not to get angry or draw attention to what has happened. This can cause embarrassment or more upset. Cleaning up after a parent or spouse is not pleasant. Remember that accidents are caused by the disease; they are not his fault. He may be as distressed as you. Try to maintain his dignity with encouragement. Remain calm. It is important to remember that you are doing the best you can.

In addition

We are learning more about caring for people with Alzheimer’s disease and other dementias every day, much of it from caregivers like you, who find solutions to problems and share them with others. You can call your local Alzheimer Society to find resources in your community. There is information. There is help. You are not alone.

Last Updated: 08/11/16
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