This page is part of PrimeCarers' guide to dementia care. It sits alongside signs that dementia is getting worse, on telling a bad week from a real change, and how to get someone to accept care, which is about the first conversation rather than the daily one. This page answers a narrower question: what to do this evening, when the answer is no.
The short answer
- The law starts from your relative's right to refuseThe Mental Capacity Act 2005 says an adult must be assumed to have capacity, and that an unwise decision is not on its own a reason to say they have lost it.
- Work out what the no is about before you ask againForgotten steps, a painful shoulder, a cold bathroom, a plate they cannot see the food against. The thing being refused is not always the thing that is wrong.
- Never put medicine in food on your own judgementCrushing a tablet or hiding it in a drink changes how the medicine works, and it needs written approval from the GP, consultant or pharmacist.
- A carer who is not family can get a different answerBeing washed by a daughter means something that being washed by a carer does not, and help from outside the family can be easier to accept.
Hourly figures on this page are what carers on PrimeCarers charge, £18 to £25 an hour with our fee included. Agencies charge £28 to £35 for the same visit.
Why they say no
What can sit behind a refusal
It helps to treat a refusal as information rather than as an obstacle. Dementia can take away the order of a task, the words to explain a problem, and the sense of why a stranger is in the bathroom. What comes out is no.
The steps have gone, not the willingness
Something hurts, and they cannot tell you
It is their house and their body
They do not want to
One change is worth acting on quickly. If your relative becomes confused over hours or a day or two rather than over months, the NHS advice on sudden confusion is to get medical help straight away. A urine or chest infection, dehydration, a new medicine or a small stroke can all cause it.
The four refusals
Washing, food, medication and the carer at the door
Four refusals come up before the others, and each has its own things to try. Find the row that matches your week. The last line of each is when to involve somebody else.
Refusal 1 of 4
Washing, bathing and changing clothes
They say they had a bath this morning, or that they will do it later, or they get angry as soon as the bathroom is mentioned.
What can be behind it
- The order of the steps has gone, so being asked to wash is being asked to do something they no longer know how to start.
- They believe they have already washed today, and from where they are sitting you are arguing with them about a fact.
- Something hurts: a shoulder that will not lift over a jumper, cold water, a shower that stings.
- Low mood, which can take away the wish to keep up appearances long before anyone calls it depression.
What to try first
- Move the wash to whichever part of the day they are calmest, rather than first thing because that is when the carer comes.
- Offer a wash at the basin with a warm flannel instead of a bath or a shower. It asks far less of somebody and it still gets them clean.
- Buy two or three of the outfit they always want to wear, so a change of clothes does not look like a change of clothes.
- Give the wash a reason that belongs to them: a visitor coming, church, a hospital appointment.
Ring the GP if you think pain or low mood is behind it, or if skin is becoming sore or broken.
Refusal 2 of 4
Food and drink
A full plate goes cold in front of them, tea is left untouched, or they push the food away and say they are not hungry.
What can be behind it
- They may not recognise what is on the plate, or know how to begin, or remember what the knife and fork are for.
- Sight and contrast: a pale meal on a pale plate in a dim room can be hard to see at all.
- Sore teeth, a dry mouth, badly fitting dentures, or trouble chewing and swallowing.
- Being asked to eat while half asleep, or while the television and the radio are both on.
What to try first
- Cut food small so it can be managed with a spoon, or offer food that can be picked up in the fingers.
- Put the food on a plain plate that contrasts with it, and turn the lights up.
- Make sure they are properly awake and sitting upright before you offer anything.
- Eat the same meal at the same table at the same time. Copying somebody else eating carries a person a long way.
Ring the GP if they are losing weight, or if they cough or their voice goes wet after swallowing, which needs a swallowing assessment.
Refusal 3 of 4
Medication
Tablets are spat out, hidden, or found later down the side of the chair.
What can be behind it
- The tablet is hard to swallow, tastes unpleasant, or has been making them feel sick.
- They do not believe they are ill, so a tablet is something being done to them for no reason they can see.
- Too many of them at once, at a moment in the day when they are already unsettled.
What to try first
- Ask the GP or the pharmacist whether the same medicine comes as a patch or a liquid. Several dementia and pain medicines do.
- Ask for the whole list to be reviewed. Some of it may no longer be needed, and a shorter list is easier to get through.
- Try the tablets at a calmer point in the day, and one at a time rather than a handful.
Do not crush a tablet or put it in food on your own judgement. That decision belongs to the GP, consultant or pharmacist in writing, and the section below explains why.
Refusal 4 of 4
Letting a carer into the house
The door is not opened, or the carer is shown in and then told to go home.
What can be behind it
- It is their house, and the person at the door is a stranger who has come to do something private.
- Accepting a carer means accepting that they need one, and that is a hard thing to agree to out loud.
- Nobody told them the visit was happening, or they were told and have not kept it.
What to try first
- Be there for the first few visits and introduce the carer by name, as somebody who is coming to help you as well.
- Start with the easiest part of the week rather than the hardest. A cup of tea, the shopping or a walk asks much less than a wash on day one.
- Keep the carer, the day and the time the same, so the visit becomes part of the week rather than an event.
- Write the visit on the calendar or the whiteboard, in the place they already look.
Tell the carer as early as you can if a visit is not going to happen. A visit the client cancels is payable in full under the contract, except for unplanned hospitalisation, illness, or another reason the carer agrees.
The washing suggestions follow the Alzheimer's Society guidance on when a person with dementia does not want to wash or change their clothes, and the food suggestions its guidance on eating and drinking. If washing is the refusal you meet daily, bathing and toileting an elderly parent covers the practical side.
In the moment
What helps when they have just said no, and what makes it harder
The minute after a refusal decides how the rest of the day goes. The aim is not to win it, but to end the moment calmly so the task can happen twenty minutes later without either of you dreading it.
What tends to help
- Stop asking and come back in twenty minutes. The no is attached to this moment rather than to the whole idea.
- Agree with the feeling rather than the fact. "You are right, it is cold in here" gets further than "you had your bath on Tuesday".
- Give them the part of the job they can still do: holding the flannel, doing the buttons, carrying their own plate.
- Offer two things you are happy with rather than one that can be refused: the blue jumper or the green one.
What tends to make it worse
- Arguing about the facts, or telling them they have forgotten. It cannot be won and it leaves you both upset.
- Explaining the reasons again at greater length. A longer sentence is harder to follow than a short one.
- Asking in the middle of something else, with the television on and two people talking.
- Taking it as a verdict on you. Refusal belongs to the illness, not to how well you are caring for them.
Medication
Medication that is refused, and the rules about hiding it in food
This is the refusal families feel worst about, because the consequences are real and the temptation to slip a tablet into a yoghurt is strong. There are rules about that, to protect your relative.
- 1
Write down which medicines are refused, and when
TodayNote which tablet, what time of day, and what the refusal looked like: spat out, hidden, or turned down. This is the first thing a GP or pharmacist will ask you. - 2
Ask about another form, and about the length of the list
This week, freeThe Alzheimer's Society points out that some dementia medicines and painkillers come as a patch or a liquid, which can be easier than a tablet. Ask for the whole list to be reviewed too, because a medicine already being taken may be causing the nausea behind the refusal. - 3
If your relative can make this decision, it is theirs
The lawThe Care Quality Commission puts it plainly: when a person has mental capacity to make the decision about whether to take a medicine, they have the right to refuse it. That holds even where the family and the GP disagree. - 4
If they cannot, the decision is not yours alone
In writing, and reviewedGiving a medicine hidden in food or drink is called covert administration. The CQC allows it only where the person actively refuses, lacks the capacity to understand what refusing means, and the medicine is essential. It must be agreed with the prescriber, recorded in the care plan and reviewed, and not decided alone.
A carer booked through PrimeCarers can prompt and assist with medication where that has been agreed and written into the care plan, and the same rules apply. Can carers give medication? explains what a carer can and cannot do with tablets.
When a carer asks
Why a carer who is not family sometimes gets a different answer
Families refused every morning for a month are sometimes surprised that a carer gets a wash done in the first week. It is not that the carer asks better. The same request costs your relative less when it comes from outside the family.
It does not cost them the same thing
They are not carrying the last ten arguments
The same face at the same time becomes part of the day
If you have reached the point of looking, you can search for carers near you and compare their rates by postcode, see how much dementia experience each one has, and message the ones you like. Every carer on PrimeCarers has interviewed with us online, and their identity, right to work and enhanced DBS on the Update Service are checked before their profile appears. They hold insurance that covers them while they work. We do not check qualifications or training: references sit on a carer's profile, and skills and training are for you to ask the carer about directly. Ask each one what they do when somebody says no, and listen for an answer about patience and timing rather than persuasion. What does dementia care cost? has the figures.
When to ring somebody
When to stop trying on your own, and who to ring
Much of a refusal can be worked through at home. Some of it should not be. Use this list to tell one from the other.
Signs that it is time to ring somebody
0 of 10 ticked
Ring today
Ring this week
Ring the council
What the law says about a relative who refuses everythingSection titled What%20the%20law%20says%20about%20a%20relative%20who%20refuses%20everything
An adult with dementia does not lose the right to make decisions because of the diagnosis. The Mental Capacity Act 2005 sets out five principles. The first is that a person must be assumed to have capacity unless it is established that they lack it, and the third is that a person is not to be treated as unable to make a decision merely because they make an unwise decision. Capacity is decided one decision at a time, so your relative can be unable to manage their money and still able to decide whether they want a bath. Where somebody cannot make a particular decision, it is made in their best interests, usually by the attorney under a Lasting Power of Attorney working with the GP. Mental capacity, the Mental Capacity Act and DoLS explained covers how a capacity assessment is carried out.
Refusing help does not shut the council out either. Under section 11 of the Care Act 2014, a local authority must still carry out a needs assessment despite a refusal where the adult lacks the capacity to refuse it and an assessment would be in their best interests, or where the adult is experiencing or is at risk of abuse or neglect. Section 42 requires safeguarding enquiries where it has reasonable cause to suspect that an adult with care needs is at risk of abuse or neglect and cannot protect themselves. Local authority funding explains the assessment and the means test, and a carer's assessment is yours in your own right, whatever your income.
Questions
Questions families ask when help is refused
Not by force. If she can make that decision it is hers under the Mental Capacity Act 2005, even where the family thinks she is wrong. What you can change is everything around it: the time of day, the warmth of the room, a wash at the basin instead of a shower, and whether something hurts. If washing has stopped altogether and her skin is sore, that is a health problem rather than a preference, so ring the GP.
Ring the GP if he is losing weight without trying, has refused all food and drink for a day, or coughs or sounds wet-voiced after swallowing, which needs a swallowing assessment. Before that, work through the ordinary causes: food he no longer recognises, cutlery he cannot manage, poor light, a pale meal on a pale plate, sore gums, or being asked to eat while half asleep.
Not on your own judgement. Crushing a tablet can change how the medicine works, and some must never be crushed. The Alzheimer's Society says it should only be done with the written approval of the GP, consultant or pharmacist. The Care Quality Commission allows it only where the person actively refuses, lacks the capacity to understand what refusing means, and the medicine is essential, with the prescriber involved and the decision recorded and reviewed.
Under the client contract a visit cancelled by the client is payable in full, apart from unplanned hospitalisation, illness, or another reason the carer agrees to. PrimeCarers charges nothing itself for a cancellation and does not set the terms between you and the carer. Notice for hourly care is 48 hours. Tell the carer as early as you can.
Yes, while they have the capacity to make that decision. The Mental Capacity Act 2005 requires that an adult is assumed to have capacity, and an unwise decision is not by itself evidence that capacity has gone. Where somebody cannot make a decision, it is taken in their best interests, usually by an attorney under a Lasting Power of Attorney. Can an elderly person be forced into care in the UK? covers this in full.
It can be, but a change over days rather than months is more likely to be something else, and something treatable: infection, dehydration, constipation, pain or a new medicine. Signs that dementia is getting worse goes through how to tell a bad week from a real change.
Sometimes, and it is worth trying rather than assuming it will fail. A carer is not asking your relative to accept help from their own child, and coming at the same time each day turns the visit into part of the routine. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency.