Incontinence and Dementia: Routines and Reassurance

Why dementia affects continence

Continence depends on more than the bladder and bowel. In dementia, many links in the chain can fail:

• Not recognising the urge, or not understanding what it means.
• Forgetting where the toilet is, or not recognising it, especially in a new place or at night.
• Not remembering what to do: the sequence of undressing, positioning, using the toilet, wiping and dressing.
• Slowed responses, so that the urge arrives and the person cannot get there in time.
• Difficulty communicating the need, especially if speech is affected.
• Mobility problems, poor balance, weakness or pain.
• Visual and perceptual problems: a white toilet in a white bathroom, dark floor mats seen as holes, mirrors that confuse.
• Fear or distress: a noisy, cold, unfamiliar or frightening bathroom, or past bad experiences.
• Apathy or depression, where the person loses interest in care.
• Medicines, such as sedatives, antipsychotics, water tablets, and some bladder or Alzheimer's medicines that affect the bladder.
• Constipation, urinary infection, enlarged prostate or an overactive bladder, which are common and treatable; see bowel incontinence and constipation in later life and urinary tract infections in older adults: atypical signs.
• Late-stage dementia, when the brain's control over the bladder and bowel fails.

Step 1: get a medical review

A sudden change in continence, or new wetting, can be a sign of infection, constipation, a medicine effect, delirium or another illness. Ask the doctor to check for:

• Urinary tract infection, constipation, impaction, diabetes, prostate trouble or retention.
• Medicines that may be contributing; never stop or change a medicine yourself.
• Pain, mobility problems and vision problems.
• Sleep apnoea and other causes of night urine.
• Delirium; see delirium in older adults.

See incontinence in older adults: causes and types and when to see a doctor about bladder or bowel changes.

Step 2: watch for signs of need

People with dementia often cannot say, "I need the toilet." Learn their signals:

• Restlessness, pacing, fidgeting or looking around.
• Tugging at clothes, the waistband or the trousers.
• Standing up and sitting down repeatedly.
• Going to corners or behind furniture, or opening cupboards and doors.
• Sudden quietness, a worried expression, sweating or flushed face.
• Muttering, repeating words or saying unusual phrases.
• Holding the groin, or crossing legs.
• Going into unusual rooms.
• Changes in behaviour, such as agitation at a particular time of day.

Keep a record: times of toileting, accidents, drinks, meals and behaviours. Patterns often emerge, such as accidents about an hour after tea. See bladder training and timed toileting.

Step 3: set up a routine

Regular toileting, offered rather than waiting for the person to ask, is the most effective strategy.

• Offer the toilet at fixed times, often every two hours during the day, on waking, after meals and drinks, before and after outings, before and after rest, and at bedtime. Adjust to the person's pattern.
• Prompt gently and positively, using the person's name and simple words: "Let us go to the bathroom now." Avoid "Do you need the toilet?", which may get "No" even when they do. Use the word the person uses.
• Praise, smile and thank them, whether or not anything happens.
• Do not wait for accidents. Be consistent through the day and in the evening.
• Allow time, with no rush, and privacy.
• Keep the sequence familiar, with the same person, same words and same path.
• Use cues: a clear sign on the toilet door, a picture of a toilet at eye level, a contrasting toilet seat, a light on, the door open; see a dementia-friendly bathroom: colour, contrast and cues.
• Make the bathroom inviting: warm, quiet, well lit, uncluttered, with a non-slip floor, and a toilet seat in a contrasting colour to the wall and floor. Remove reflective or confusing items and cover mirrors if they distress.
• Keep the route short and clear. At night, leave the bathroom light on and use night lights; see motion night lights for seniors.
• Consider a commode in the bedroom or the living area, especially at night or if the toilet is far; see commode chair guide.
• Simplify clothing: elastic waists, no belts or complicated fastenings, and clothes that can be removed quickly; consider trousers with Velcro or side openings.
• Support the sequence: guide step by step with short instructions ("Pull down your trousers. Sit down.").
• Use a stable, comfortable toilet seat with arms and a rail; see raised toilet seat guide.
• Fluids and fibre: encourage drinks through the day, because dehydration worsens confusion and constipation; see hydration for older adults.
• Reduce caffeine, and avoid evening fluids in excess, as advised by the doctor.

Step 4: products as a safety net

Products help but should not replace routines. Consider:

• Pull-ups or briefs suited to mobility and the situation; see pull-ups or briefs: choosing the right product and choosing incontinence products by situation.
• Underpads and mattress protectors for beds and chairs; see underpads: disposable and washable options and mattress protectors for incontinence.
• Dark, easy-to-remove clothing.
• Presentation matters: call products by words the person accepts, such as "underwear" or "pants", not "nappies".
• Introduce gradually, explaining kindly. Some people pull off pads; check for discomfort, a poor fit or skin problems.

Responding to accidents

• Stay calm and gentle: do not scold, sigh, show disgust or say "Why did you do that?" The person cannot control it, and may not understand.
• Reassure: "It is all right. Let us get you comfortable."
• Clean and change promptly, in privacy, with warm water or gentle wipes and a soft touch; see wipes and perineal hygiene done gently and how to change an adult diaper in bed.
• Explain each step simply, and use distraction (music, a favourite item) if the person is distressed.
• Protect the skin: see incontinence-associated skin damage: prevention and care.
• Do not make an issue of it in front of others.
• Review the routine: what was going on before, how long since the last toilet, what the person was doing.

Understanding difficult behaviours

Hiding wet clothes or underwear. The person may feel ashamed. Respond with kindness, check cupboards and laundry baskets discreetly, and keep a supply of clean clothes.

Using the wrong place, such as a wastebasket, a corner or a cupboard. The person may not recognise the toilet, or may feel urgency. Improve cues, add a commode, take them to the toilet more often, and remove objects that look like toilets.

Smearing stool. Distressing, but usually a response to discomfort, confusion or an attempt to clean. Check for constipation or skin soreness, keep nails short, use all-in-one clothing (such as a jumpsuit with back fastenings) if needed, wash gently and distract. Seek advice from the doctor or a dementia specialist. See dementia challenging behaviours.

Refusing to toilet or to change. The person may be afraid, in pain, cold or not understand. Try a different approach, at a different time, with a different carer, in a calmer room. Offer choices and keep dignity. See bathing a parent who resists and managing a parent who refuses help.

Pulling at pads or a catheter. Check for discomfort or itching, ensure a good fit, and seek advice. See catheter care basics for families.

Night wandering to toilets. Use night lights, a commode and a calm routine; see dementia sundowning and managing incontinence at night.

Sexual or disrobing behaviour may reflect need for the toilet, discomfort or heat. Respond calmly.

In later stages

In advanced dementia, the person often loses control of both bladder and bowel, cannot use the toilet and needs products and full personal care. The goals shift to comfort, skin protection, dignity and prevention of infection. Keep the person clean, dry and comfortable, change promptly, and check skin often; see dementia stages and what each needs at home. A catheter is sometimes used in selected situations, under medical advice, and carries risks; see catheter care basics for families. Consider palliative support; see palliative care at home: what it is and how to arrange it.

Looking after the carer

Caring for incontinence in dementia is physically and emotionally heavy. Feelings of disgust, frustration, grief and guilt are common and normal. Share care, take breaks, join a support group and ask for help; see caregiver burnout: signs and prevention, respite care and taking a break and caring for a parent with dementia at home. If you hire an attendant, train them well and check how they treat your parent; see hiring a home attendant checklist.

When to ask a professional

Ask the doctor for a medical review, particularly of sudden changes, and a medicine review. Ask a continence nurse, occupational therapist or dementia specialist about routines, bathroom adaptations and products. Ask a pharmacist about bladder medicines. Seek urgent help for fever, new or worse confusion, blood in urine or stool, inability to pass urine, severe pain or a swollen abdomen; call 112 for emergencies.