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Understanding incontinence in dementia

Key points

  • Incontinence in dementia is a brain problem, not a behavior problem. The person is not doing it on purpose.
  • Always rule out a UTI first when there is a sudden change in incontinence or behavior.
  • A proactive, scheduled toileting routine is more effective than waiting for cues.
  • Simplify the bathroom: use a raised seat, good lighting, and remove obstacles to reduce fear and confusion.
  • Use calm, one-step verbal cues and avoid asking questions that require a cognitive decision.
  • Dress your loved one in easy-to-remove clothing to reduce the time between urge and toilet.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Rule out a UTI first. If your loved one has a sudden increase in accidents, is more confused than usual, or seems agitated, contact their doctor and request a urine test. A UTI can cause dramatic behavioral changes and is often treatable with antibiotics. Do not assume the behavior is just 'part of the dementia.'

  2. Establish a routine, proactive toileting schedule. Do not wait for them to ask or show signs of needing to go. Take them to the bathroom every two hours during the day, and once or twice during the night. Use a timer or an alarm on your phone to remind yourself. This prevents accidents before they happen.

  3. Simplify the bathroom environment. Remove throw rugs, keep a clear path to the toilet, and use a nightlight or motion-sensor light so the bathroom is always visible. Place a brightly colored toilet seat or a raised toilet seat to make the toilet more visible and easier to use. A contrasting color can help with depth perception.

  4. Use simple, one-step verbal cues. Instead of saying 'Let's go to the bathroom,' try a single, clear instruction like 'Let's sit down here' while guiding them to the toilet. Avoid asking 'Do you need to go?' as they may not know. Use a calm, reassuring tone of voice.

  5. Address fear of sitting. If they resist sitting on the toilet, try a bedside commode placed in their room. The lower height and familiar location can feel less intimidating. You can also try a padded toilet seat or a seat with armrests to provide a sense of security and support.

  6. Make the process comfortable and warm. Ensure the bathroom is warm, as a cold room can increase resistance. Use a warm washcloth or pre-warmed wipes. If they are sensitive to the feel of water, use a gentle, no-rinse foam cleanser instead of a wet washcloth.

  7. Dress for success. Use clothing that is easy to remove quickly, such as pants with elastic waistbands or velcro closures. Avoid belts, buttons, and zippers. This reduces the time between the urge and the toilet, and makes it easier for you to assist.

  8. Use absorbent products as a backup, not a first line of defense. Adult briefs or pads can reduce the stress of accidents, but they should be used in combination with a toileting schedule, not as a replacement for it. Change them frequently—at least every two to three hours—to prevent skin irritation and UTIs.

  9. Watch for non-verbal cues. Learn your loved one's unique signs of needing the bathroom. This could be restlessness, tugging at their clothes, pacing, a sudden change in mood, or a specific facial expression. When you see these cues, immediately guide them to the bathroom.

  10. Stay calm and matter-of-fact after an accident. Do not scold or show frustration. Say something like 'It's okay, let's get cleaned up' and help them change. Shame or anger will increase their anxiety and make future accidents more likely. Your reaction sets the tone for their sense of safety.

What not to do

  • Do NOT ask 'Do you need to go to the bathroom?' This puts the cognitive burden on them to recognize and communicate a need they may not feel. Instead, use a proactive schedule and direct, gentle guidance.

  • Do NOT argue or try to reason with them about why they should use the toilet. Their brain cannot process logic in that moment. Arguing will only escalate their confusion and distress. Redirect with a calm, simple action.

  • Do NOT rush them. Hurrying increases anxiety and can trigger a fear of falling. Give them plenty of time to sit, relax, and empty their bladder. Rushing can also lead to incomplete emptying, which increases the risk of UTIs.

  • Do NOT use a harsh or scolding tone after an accident. They are not doing this on purpose. Shaming them will damage trust and increase their fear and confusion. Your job is to help, not to punish.

  • Do NOT assume that once they are incontinent, they will always be incontinent. Many causes of incontinence are temporary or manageable. A UTI, constipation, or a medication side effect can all cause a sudden change. Always investigate the cause before accepting it as permanent.

  • Do NOT force them to sit on the toilet if they are terrified. Forcing the issue can create a lasting trauma and make the problem worse. Instead, try a different approach, like a bedside commode or a urinal, and address the underlying fear.

Practical tools

  • The Proactive Toileting Schedule

    Create a simple chart or set a repeating alarm on your phone. Write down the times you will take them to the bathroom (e.g., 7am, 9am, 11am, 1pm, 3pm, 5pm, 7pm, and once at night). Check off each time. This removes the guesswork and reduces accidents. Use a phrase like 'It's time for our bathroom break' to make it a routine, not a question.

  • The 'Go-First' Phrase

    Instead of asking, use a calm, leading statement. Say, 'Let's walk to the bathroom together' or 'Let's sit down here for a moment.' Pair the phrase with a gentle touch on the arm or a guiding hand. This provides direction without demanding a cognitive response.

  • The Raised Toilet Seat with Armrests

    A raised toilet seat (2-4 inches higher) makes it much easier to sit down and stand up, reducing fear of falling. Armrests provide additional support and a sense of security. This simple device can dramatically reduce resistance to using the toilet.

  • The Bedside Commode

    If the bathroom is far away or the person is afraid to walk there, a bedside commode is a game-changer. Place it near the bed, with a privacy screen if possible. It reduces the distance and the time between the urge and the toilet. Empty and clean it after each use.

  • The 'Warmth and Comfort' Kit

    Keep a small basket in the bathroom with: a soft, warm towel, pre-moistened flushable wipes (warmed in a wipe warmer if possible), a no-rinse foam cleanser, and a small space heater. A warm, comfortable environment reduces sensory distress and makes the experience less frightening.

  • The UTI Symptom Checklist

    Keep a simple checklist near the bathroom. Look for: new or worsening confusion, increased agitation, a sudden change in incontinence patterns, dark or foul-smelling urine, fever, or complaints of pain. If you see any of these, call the doctor immediately. Early detection of a UTI can prevent a serious crisis.

Discuss with your clinician

If your loved one has a sudden onset of incontinence, especially with confusion or agitation, ask the doctor for a urine culture to rule out a UTI.

If they are in pain when urinating or seem to have difficulty starting or stopping the stream, discuss this with their doctor. It could be a prostate issue (in men) or a bladder infection.

If skin breakdown or rashes occur despite frequent changes, ask about prescription barrier creams or a referral to a wound care nurse.

If you are considering a catheter for convenience, discuss the significant risks of infection and injury with the doctor first. Catheters are rarely a good solution for dementia-related incontinence.

If the person is on medications that affect bladder function (like diuretics or some blood pressure meds), ask the doctor if the timing or dosage can be adjusted to reduce accidents.

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