When a Person With Dementia Refuses Care

"No." You will hear it many times in dementia care. A person refuses the bath they need, pushes away the spoon, or will not change clothes they have worn for three days. A refusal is not a failure, and it is not bad behavior. It may be fear, pain, embarrassment, or not knowing what you want. The person also has a right to say no. The skill at this level is to find a way that works without force, and to know when a refusal has become a health problem that the nurse must handle. You do not make that call alone, and you do not win by forcing care. Follow the care plan, and ask the nurse if the plan and the moment do not match.

What You Will Be Able to Do

• Find out what is behind a refusal.
• Use the stop, wait and try again approach.
• Adapt bathing, dressing, eating, toileting and mouth care.
• Keep the person safe while you do this.
• Track refusals, and report them when they matter.

Why a Person Says No

A task that feels ordinary to you can feel very different to someone with dementia. A stranger is taking off their clothes in a cold room, and water is falling on their head. They do not know why, and they may not know who you are.

Force turns a refusal into a fight. It also breaks trust that takes weeks to rebuild. Forcing care on someone can be abuse, even if you mean well.

The Basic Approach: Stop, Wait, Try Differently

1. Stop right away. Do not keep going while they say no.
2. Stay calm. Do not argue or explain why they need it.
3. Check for a cause. Look for pain, cold, a full bladder or fear.
4. Leave for 10 to 15 minutes. The person may forget the refusal. This is one case where memory loss can help.
5. Come back differently. Change the words, the time, the place or the person helping. If the resistance is about you, a coworker may have better luck, and that is nothing to take personally.
6. Offer a smaller version. A washcloth instead of a bath, or one item of clothing.
7. Record what happened, and report it.

Bathing

Bathing is the care task most often refused. Full baths do not have to happen every day. Ask the nurse what the care plan needs and what can be swapped.

Before you begin:

• Find out when and how they used to bathe, and keep to that. A lifelong evening bather may fight a morning shower.
• Warm the room, and gather everything first.
• Check the water yourself, every time, even if they can do it alone. A person with dementia may not sense dangerous heat, and they may not react in time. Home water heaters should be set to 120°F or lower.
• Put down a nonskid mat. Use grab bars and a shower chair if they are in the plan.
• Fill the tub only 2 to 3 inches, and consider filling it after they sit down.

During the bath:

• Change your words. "Let's wash up" or "Let's get you warmed up" is easier than "It's time for your bath."
• Offer a small choice: "Now, or in 15 minutes?" or "Bath or shower?"
• Keep them covered. Use a towel over the shoulders and lap, and wash under it. Some people will get into the shower wearing a towel.
• Give them a job, such as holding the washcloth.
• Coach one step at a time. Show them, and gently guide their hand if they accept it.
• Start with the feet or hands, and move up. Wash the hair last, or on a different day, because water on the head is what frightens many people. A washcloth over the eyes can help.
• Play calm music, or sing together.

Other options: sponge baths, washing one part of the body each day, or a no-rinse cleanser with warm wet towels. A no-rinse bath can work well when it is done regularly and thoroughly. Always clean the groin, skin folds and under the breasts, especially if the person is incontinent.

Afterward: have them sit to dry and dress. Pat the skin dry, and check for rashes, sores and red areas, then report what you find.

Worked example. Mrs. Vega screams when the shower starts. The log shows that the hand-held sprayer is what upsets her. You warm the bathroom, drape a towel around her, and wash her feet first with a warm washcloth while she sits. You offer her the washcloth for her face. You wash her hair on Saturdays, with a salon-style basin. Two weeks later she is getting clean with no screaming.

Warning: If a person is fighting you in a wet room, stop. Falls and injuries happen quickly on wet floors. Help them to a safe seat, cover them and come back later.

Dressing

• Offer two simple clothing choices, then help as needed. A closet full of clothes is too much.
• Lay clothes out in the order they go on, and hand over one item at a time.
• Give one instruction at a time: "Put your arm in the sleeve."
• Use clothing that is easy to manage: front closures, loose waists, stretchy cloth, and nonslip shoes.
• If they want the same outfit every day, ask the family about buying duplicates.
• Allow extra time. Do not worry if the colors clash. Being dressed is the goal, not looking perfect.

A person who refuses to remove soiled clothes needs extra patience. Try again after a calm activity, or offer a fresh shirt as a nice surprise. Tell the nurse if it goes on, because skin can break down.

Eating and Drinking

Someone with dementia may not recognize food, may forget how to use a fork, or may have a problem they cannot explain. Check first:

• Sore mouth, loose dentures, or a tooth problem.
• A new medicine, or a change in dose.
• Too many foods on the plate.
• Constipation or feeling sick.
• Too much noise or too many people.

Then try these ideas:

• Use a white plate on a plain placemat that contrasts with it, so the food stands out. Avoid patterns.
• Serve one or two foods at a time.
• Allow an hour or more if needed.
• Offer finger foods such as sandwiches, if the diet allows.
• Try small meals more often.
• Sit with them, and eat or drink something yourself so they can copy you.
• Use hand-over-hand help: put the spoon in their hand, your hand around theirs and lift together.
• Test food and drink temperature, because they may not notice when it is too hot.
• Sit them fully upright with the head slightly forward, and check the mouth afterward for food left behind.

Never force food or drink, and never pinch the nose or hold the jaw open. In the late stage, a person may stop wanting to eat as part of the disease. How to handle that is a decision for the family and the care team. It is not for you to settle by pushing the spoon.

Warning: Stop feeding and call the nurse if you see coughing or choking during meals, a wet or gurgling voice after swallowing, food held in the cheeks, or a new refusal of all food and drink. These can be signs of swallowing trouble, and food or fluid may go into the lungs.

Follow the diet and fluid orders exactly, including thickened liquids. Do not change a food's texture or give a treat without checking.

Toileting

People may refuse the toilet because they do not feel the need, cannot find it, are embarrassed, or do not know what the toilet is for.

Use a routine. The Alzheimer's Association suggests taking the person first thing in the morning, about every 2 hours during the day, right after meals and just before bed. If you track when accidents happen, you can go a little before that time.

Learn the signs. Restlessness, pacing, sudden quiet, hiding in corners or pulling at clothes can mean a need. Some people have their own phrases. Add these to the care plan.

Make it easy. Keep the door open and put a picture of a toilet on it. Keep the path clear and use night lights. A raised seat and grab bars help if they are in the plan.

Protect dignity. Be matter-of-fact. "Anyone can have an accident" works better than scolding or a big reaction. Use adult words, not "diaper" or "potty."

Do not limit fluids to prevent accidents, because dehydration can bring on infections and more problems. Offering less to drink close to bedtime is different, and it should follow the care plan. Tell the nurse about any new loss of bladder or bowel control, because it may have a medical cause.

Mouth Care

Mouth pain often sits behind refusals to eat, so mouth care matters more than it may seem.

• Offer the brush and show the motion on yourself.
• Use short steps: "Open." "Brush." "Rinse."
• If they will not open, try a little later, or use a soft brush along the outside of the teeth.
• Never put your fingers between the teeth of someone who may bite.
• Report bleeding gums, sores, a bad smell or loose teeth.

Medicines

If you remind a client about medicine and they refuse, do not argue or trick them. Do not hide pills in food, crush them or change the time. Those are decisions for the nurse and pharmacist, because some pills cannot be crushed, and hiding them raises consent questions. Your role depends on your state and your job. Offer the reminder again later, within what the plan allows, and report the refusal.

When a Refusal Needs the Nurse

A single refusal that resolves is normal. Report it anyway in your notes. Call the nurse the same shift if any of these happen, and sooner if you are worried.

Your employer may set a specific rule, such as how many missed baths or meals must be reported.

Example report. "Mr. Cole refused his shower three days in a row, which is new for him. He grabs his right shoulder when I help him undress. He has eaten normally. I gave him a sponge bath today. His skin looks okay."

The nurse now has a lead: he may be refusing because his shoulder hurts.

Tracking Refusals

A short note helps the whole team: what you offered, what happened, what you tried and what worked. Write down successes too. "Takes shower well at 10 a.m. when her favorite hymn is on" may be the most useful line in the chart.

Common Mistakes

Check Your Understanding

1. Mrs. Silva refuses a bath and swings at you when you try to help her undress. What do you do?

Stop and step back. Stay calm and come back in 10 to 15 minutes, or offer a sponge bath instead. Check for pain and cold, and report what happened.

2. A man will not dress. He stands in front of a full closet looking lost. What do you try?

Take out two simple outfits and ask which he likes. Hand him one item at a time and give one short instruction. Help as much as he needs.

3. A woman with dementia has eaten very little at the last two meals and is holding her cheek. What could be going on, and what do you do?

She may have mouth or tooth pain. Look at her mouth if she allows it, and tell the nurse this shift. Do not force food.

4. A client refuses her morning pills, and her son tells you to crush them in applesauce. What do you do?

Do not crush or hide them. Tell the nurse about the refusal and the son's request. The nurse or pharmacist decides what can be done.

5. Each time you offer the toilet, a man says "no," and then he has an accident 20 minutes later. What can you change?

Change your words: "Come with me" works better than a question. Take him at regular times, about every 2 hours, and just before his usual time. Keep a record of when accidents happen.

Key Takeaways

• A refusal is information. Look for fear, pain, cold or too many steps.
• Stop, wait 10 to 15 minutes and try again differently. Never force care.
• Bathing can be reshaped: warm the room, keep the person covered, go slowly and do the hair last.
• Offer two choices, one step at a time.
• Stop feeding and call the nurse for coughing, a wet voice or food held in the mouth.
• Report refusals that affect food, fluids, medicine, skin or repositioning.