Toileting, accidents & incontinence in dementia: dignity & practical help

Messages between the brain and the bladder or bowel may not work as they used to. The person may not feel the urge, or may react to it too slowly to get there in time.

A person may forget where the bathroom is, or no longer recognise the toilet. Some people use a bin, a plant pot or a corner instead, because it looks like the right place.

The section on setting up the bathroom below has simple fixes for this.

Someone may forget how to undo their clothes, or take too long with fiddly fastenings. Hard-to-remove clothing is a common reason for accidents.

The person may struggle to tell you they need the toilet, or may not understand when you ask. They might say something that seems unrelated instead.

Embarrassment may lead a person to refuse help, or to try to deal with an accident alone. Some hide wet or soiled clothes and then forget where they put them.

Slower walking, poor balance or other physical limits can mean the person can’t reach the toilet in time, even when they know they need to go.

Infections, constipation, prostate problems, diabetes, stroke or Parkinson’s disease can all cause bladder or bowel problems. Some things a person takes can also relax the bladder.

The next section explains why getting these checked comes first.

A urine infection can bring on delirium: sudden, severe confusion. A sudden, unexplained change, like more confusion, agitation or withdrawal, can be a sign. The person may not be able to tell you how they feel.

Other signs to watch for

• A fever
• A sudden urge to pee, or peeing more often
• Burning or pain when peeing
• New accidents

Constipation makes bladder control harder. Liquid stool can also leak around a hard blockage, which can be mistaken for diarrhoea.

Everyday habits that help

• A daily walk, if they are able
• Enough fibre, such as cereals, brown rice, fruit, potatoes and vegetables
• Plenty to drink through the day
• Time to sit on the toilet without rushing

Talk with their clinical provider before trying anything for constipation, especially if it lasts.

Note down

• Anything new the person has started taking
• How often they go, and whether accidents are daily or now and then
• Whether leaks happen when they cough, laugh or lift
• When accidents happen (time of day, after drinks or meals)

Ask the clinical provider to review everything the person takes, in case something is making accidents worse. The Toilet & accident log worksheet can help.

If the first check doesn’t solve it, ask for a referral to a continence nurse or adviser. You may need to be persistent to find someone who understands dementia. They often ask you to keep a chart of toilet habits.

Others who can help

• A community or home health nurse, for products, hygiene and skin advice
• An occupational therapist, for equipment and home changes
• A physical therapist, for movement and balance

Good times to offer the toilet

• About every two hours during the day
• After meals (a visit after breakfast often helps with bowel movements)
• Before going out
• First thing in the morning
• Just before bed

Track when accidents happen, then plan trips just before those times. Phone reminders can help you remember.

Use adult words, not baby talk, and try not to sound patronising. Show the way, or walk there together. Afterwards, check they actually went and weren’t distracted.

Try saying…

• “I’m going to wash my hands, come with me.”
• “Let’s stop at the bathroom before lunch.”
• “The bathroom is just here, I’ll wait outside.”

Give the person plenty of time to empty their bladder and bowels. If they struggle to start, running water in the sink or offering a drink can help.

Guide them to stand in front of the toilet before undoing clothes. If sitting still is hard, music or a familiar book can help them stay.

It is tempting to cut drinks, but don’t limit fluids during the day. Dehydration can lead to a urine infection and more incontinence.

Instead

• Cut back on coffee, tea and cola, which make people pee more
• Encourage drinks spread through the day
• Have fewer drinks in the last couple of hours before bed

Before you go

• Find out where accessible toilets are
• Offer the toilet just before leaving
• Pack spare clothes, spare pads, wipes and a bag for soiled items

The Going-out kit worksheet can help you remember everything.

• Clear furniture and clutter from the route
• Keep the bathroom door open when it is free, so the toilet is visible
• Light the route well, especially at night
• Paint the door a colour that stands out from the wall
• Put a bright sign with a word and a picture of a toilet on the door, at eye level

A toilet seat in a contrasting colour, such as a dark seat on a white toilet, makes it easier to see. Coloured tape around the rim can help with misses.

A person may mistake their reflection for someone else and think the bathroom is taken. If this seems to happen, try covering or removing the mirror.

• Fit grab bars on both sides of the toilet
• Raise the toilet seat to make sitting and standing easier
• Some men find sitting down easier if balance is poor

Some people can’t work a lock once it is shut. Remove or disable locks, or make sure they can be opened quickly from outside.

If they are alone in the bathroom, keep anything harmful out of reach.

Remove plants and wastebaskets, or put lids on them, so they can’t be mistaken for a toilet.

Choose clothes that are quick to take off and easy to wash. Elastic waistbands and Velcro fastenings are usually easier than zips and buttons.

Let the person choose between two outfits that both work, so they keep a say in what they wear.

Pads and pull-up pants can be worn all day or only at night. Choose the right absorbency, check they don’t rub or leak, and change them as often as needed.

Some people use them only when getting to a toilet might be hard, such as on a trip.

Use adult, everyday words. Present products as normal and practical, not as a sign of failure.

Try saying…

• “These are for peace of mind when we’re out.”
• “Lots of people wear these, they’re just like underwear.”

Waterproof mattress protectors and absorbent bed or chair pads keep surfaces dry. Pads come in washable and disposable kinds. Keep the waterproof layer away from the skin to avoid soreness.

A bedside commode or urinal bottle can help when getting to the bathroom is hard. It only works if the person recognises it, knows how to use it and is willing to.

Try not to look angry or upset, even if you feel it. Don’t scold or make the person feel guilty. A matter-of-fact approach, with gentle humour if it suits you both, can help.

Try saying…

• “Anyone can have an accident.”
• “No problem, let’s get you comfortable.”
• “I’ve got this, it’s no trouble at all.”

Avoid

• Baby talk
• Talking about the accident in front of others
• “You wet yourself again.”

Respect privacy as much as you can. Give the person space, but let them know you are just outside the door if they need you.

Let them do as much of the clean-up as they can. Respect their usual ways, such as using a bidet or a certain hand.

1. Put on disposable gloves.
2. Wash the person gently with mild soap and warm water, wiping front to back.
3. Dry carefully, then help them into clean clothes and a fresh pad.
4. Put used pads in a disposal bag straight away.
5. Wash soiled clothes promptly, or soak them in a container with a lid until you can.
6. Remind the person to wash their hands, and wash your own.

Hiding usually comes from embarrassment. Respond calmly rather than asking “why?”, and never shame them.

Try this

• Check the usual hiding places quietly
• Keep a lidded laundry basket in the bathroom
• Keep spare clean clothes where they can find them

Toilet care can be one of the hardest parts of caring, especially for a husband, wife, son or daughter. Try not to let it damage your relationship. If your feelings are difficult, talk to a doctor, nurse or continence adviser.

Other carers understand. The Alzheimer’s Association’s free online community, ALZConnected, is one place carers share tips about this.

The Caring for yourself as a dementia carer guide has more on rest, respite and support.

Call 800-272-3900 any time, day or night, to talk through toilet problems or anything else about dementia care.

The Eldercare Locator, a U.S. government service, connects families with local services such as home care, caregiver training and respite.

Many countries have continence nurses or advisers who can assess the problem and help with products. In the UK, your GP can refer you to a continence service, and Alzheimer’s Society has detailed advice. In Canada, your local Alzheimer Society can help.