Incontinence & Dementia — Patient & Caregiver Handout

1) Quick overview — what’s happening

Incontinence (loss of bladder or bowel control) is common as dementia progresses — especially middle to late stages. It can pose a great challenge to patients and caregivers, but it may be more manageable than you think.

Causes of incontinence include the dementia itself (brain changes that interrupt toilet awareness), reversible medical problems (UTI, constipation, medications, mobility issues), and environmental barriers (can’t find the bathroom, hard-to-remove clothing).

2) When to contact the clinician now

• Call the doctor if any of these appear:
• Sudden change in continence (possible UTI or acute cause)
• Pain, fever, blood in urine, or persistent constipation
• You suspect medications may be contributing (new sedatives, diuretics, anticholinergics)
• Incontinence is new and is causing skin breakdown, infections, or severe caregiver strain

3) Practical at-home strategies (easy to try today)

Scheduled toileting (timed voiding): Take the person to the bathroom every 1.5–3 hours, after meals, and upon waking. Keep a log of toileting times and fluid intake to identify patterns. Use clear, one-step cues like “Toilet now.”

Make the bathroom obvious & safe: Clear pathways, ensure good lighting, use a nightlight, install grab bars, consider a raised toilet seat, and add a clear “Bathroom” sign with text or pictures.

Clothing that’s easy: Choose elastic waistbands, avoid belts and zippers, and consider layered clothing for easy adjustments while maintaining dignity.

Use cues & routines: Link toileting to daily activities such as after meals or before bedtime. Watch for non-verbal signals (agitation, fidgeting) that may indicate the need to use the bathroom.

Prompting vs. forcing: Offer gentle reminders, praise successes, and avoid arguments. Remain calm and patient if the person resists.

Manage constipation: Include fiber-rich foods, encourage adequate fluids, and promote physical activity like walking. Consult a healthcare provider for persistent constipation or short-term laxatives if needed.

4) Products & hygiene

• Use breathable, absorbent pads or pull-on protective underwear when needed.
• Keep wipes and a disposal bin nearby; consider waterproof mattress pads.
• Clean gently after accidents, pat dry, and use barrier creams to protect skin.
• Change wet clothing promptly to prevent sores.
• Not strictly for incontinence, but toilet lifts and grab bars can be helpful with general toileting

5) Communication & dignity

• Explain each step simply and clearly.
• Avoid shaming — accidents are a symptom of the disease, not a choice.
• Caregivers: offer reassurance and stay calm. Tone of voice matters more than words.
• Preserve privacy by closing doors or curtains and limiting unnecessary exposure
• Use respectful, adult language and avoid shaming or infantilizing the person (“trouble with toileting” rather than “soiling”)
• Offer simple choices to support autonomy without causing overwhelm. Give only two options when offering.
• Promote independence by allowing the person to do as much as safely possible
• Be matter-of-fact with accidents—normalize them and avoid scolding ("it's OK, accidents happen")
• Protect modesty by covering with a towel or blanket during care
• Watch for nonverbal cues such as pacing, restlessness, or clothing pulling, which may signal the need to toilet
• Make the bathroom environment easy to access with clear paths, good lighting, and simple clothing

6) Other tips

• The average patient only needs 40–50 ounces of all fluids in a day, though this may be different in certain diseases such as heart or kidney failure.
• Avoid dehydration and maintain adequate fluid intake, but can specifically reduce evening intake.
• Reduce salt intake, particularly for those with congestive heart failure. Major sources of salt come from processed/packaged foods, eating out, snacks, soups.
• Reduce evening consumption of diuretic drinks like caffeine, carbonation, and alcohol after 5pm.
• Avoid use of nighttime diuretic meds (lasix/furosemide, hydrochlorothiazide, spironolactone) and move it to morning or mid-afternoon. Discuss this with your care team first.
• Treat swelling in legs with compression stockings, or afternoon elevation of the legs (above the level of the heart, 30 minutes).
• Avoid high blood sugars at night for those with diabetes.
• Good sleep hygiene: Sleep in a quiet room with low lighting and appropriate temperature, avoid nighttime electronic devices, avoid daytime naps.

7) When toileting becomes very difficult

• Discuss nighttime needs, safety, and caregiver limits with the healthcare team.
• Some people need scheduled nighttime care or more frequent checks.
• Respite/home care may be needed to reduce caregiver strain.
• We can help plan next steps if continence care ultimately becomes too demanding at home.

Sources

Alzheimer’s Association: Incontinence and dementia care tips
https://www.alz.org/help-support/caregiving/daily-care/incontinence

Family Caregiver Alliance: Toileting & caregiver coping strategies
https://www.caregiver.org/resource/incontinence-dementia/