How to Assess Capacity in Dementia A Carers Guide to the 5 Principles and Practical Examples
- CSS
- Aug 18
- 29 min read
A person with dementia can forget a name, lose track of time, repeat a question three times in ten minutes, and still be perfectly able to make a particular decision. They can also seem confident, cheerful, and articulate, yet be unable to understand the risks of a choice in front of them.
That is why capacity is one of the most sensitive issues in dementia care. It affects daily choices, safety, independence, finances, medical treatment, where someone lives, and how much support they receive. It also affects dignity. Getting it wrong can mean taking over too soon, or leaving someone to cope with a decision they cannot safely make.
This guide is written for carers, family members, and people supporting someone with dementia. It explains what mental capacity means, the five principles behind the assessment framework, how to approach an assessment in everyday life, and what a practical capacity conversation might look like.
The legal framework most often referred to here is the Mental Capacity Act 2005, which applies in England and Wales and is built around five key principles. Scotland and Northern Ireland have different legal frameworks, although many of the same caring and ethical ideas apply. This article is for general information only. For serious, disputed, medical, financial, or legal decisions, seek advice from the relevant health or social care professional, solicitor, advocate, or local authority team.
What capacity means when someone has dementia
Mental capacity means the ability to make a specific decision at the time it needs to be made.
That sentence matters because capacity is not a fixed label. A person is not simply “capable” or “incapable” in every part of life. Capacity is:
Decision-specific
Time-specific
Affected by the way information is given
Linked to the complexity and consequences of the decision
Not decided by diagnosis alone
A diagnosis of dementia does not automatically mean someone lacks capacity. Many people with dementia continue making a wide range of decisions for years. They may choose what to wear, what to eat, who to see, whether to go for a walk, how to spend small amounts of money, and sometimes more complex decisions too.
At the same time, dementia can affect memory, reasoning, language, awareness of risk, judgement, concentration, and the ability to compare options. These changes can make some decisions hard or impossible without support.
Capacity is about the person’s ability to make this decision, now.
Capacity is not the same as wisdom
A person can make a decision others see as unwise and still have capacity.
For example, someone may decide:
To spend £40 on flowers when a carer thinks it is too much
To eat cake before their main meal
To refuse a social group they might enjoy
To wear the same jumper again because it feels comfortable
To keep a sentimental object even though it has little practical use
Those choices may frustrate others, but frustration is not proof of incapacity.
The key question is not “Do I agree with this decision?” The better question is:
Can this person understand, remember long enough, weigh up, and communicate the decision in front of them?
That distinction protects autonomy. It stops carers, relatives, and professionals from replacing a person’s preferences with their own just because they would choose differently.
Capacity may change during the day
Many people with dementia have better and worse times. Some feel clearer in the morning. Some become more confused when tired, hungry, thirsty, in pain, anxious, overstimulated, or unwell. Infections, constipation, poor sleep, medication changes, dehydration, grief, and changes in routine can all affect thinking.
This means a person may lack capacity for a decision at one point in the day but have it later. If the decision is not urgent, it is usually better to wait for the best time.
For carers, this is one of the most practical parts of capacity assessment. Sometimes the fairest assessment is not a longer conversation. It is a better-timed conversation.
Good timing might mean:
After breakfast rather than late afternoon
In a quiet room rather than a noisy hospital ward
After glasses and hearing aids are in place
When pain relief has had time to work
When the person is not being rushed
With familiar objects, photos, written notes, or simple prompts nearby
With a trusted person present, if that helps
Capacity is not assessed in a vacuum. The environment can either support the person’s ability or make it harder for them.
Capacity applies to different decisions in different ways
A person may have capacity to decide what to eat for lunch but not to manage a complex property sale. They may understand whether they want a visitor today but not understand a legal document. They may choose clothes independently but need support to decide whether to accept a package of care.
Here are some common decisions where capacity may come up in dementia care:
Decision | Why capacity may need careful thought |
Taking medication | The person may need to understand the purpose, benefits, and risks of refusal |
Accepting home care | The person may need to understand what help is needed and what may happen without it |
Managing money | The person may be at risk of mistakes, scams, unpaid bills, or pressure from others |
Driving | The person must understand safety, legal duties, and possible risk to others |
Choosing where to live | The person may need to weigh safety, independence, care needs, relationships, and finances |
Medical treatment | The person may need information about options, risks, benefits, and alternatives |
Contact with others | The person may need to understand the benefits and risks of seeing or avoiding someone |
The more serious or complex the decision, the more careful the assessment should be. A casual chat may be enough for an everyday low-risk choice. A major medical, financial, or accommodation decision usually needs a proper assessment by the professional responsible for that decision.
Who assesses capacity
In everyday caring, carers often make informal judgements about small daily decisions. For example, if someone can choose between tea and coffee, there is no need for a formal process.
For significant decisions, the person who assesses capacity is usually the person who needs the decision to be made, or the professional responsible for the decision. A doctor may assess capacity for medical treatment. A social worker may assess capacity around care arrangements. A solicitor may consider capacity for legal documents. A financial institution may have its own processes where money is involved.
Family carers play a crucial role because they know the person well. They may notice patterns, triggers, usual communication style, values, and signs of distress. They can support the person to understand information. They can provide background. They can ask for a formal assessment when needed.
A carer should be cautious about treating their own view as final for serious decisions, especially where there is disagreement, risk, money, restrictive care, or conflict within the family.
The five principles behind the capacity assessment framework
The Mental Capacity Act 2005 is built around five principles. These principles are not just legal ideas. They are practical safeguards for everyday care.
They help carers avoid two common mistakes:
Taking over too quickly because dementia is present
Leaving someone unsupported because they can still answer some questions
The five principles are:
Assume capacity unless shown otherwise
Support the person to make the decision before deciding they cannot
Do not treat someone as unable to decide just because they make an unwise decision
If a decision is made for someone who lacks capacity, act in their best interests
Choose the least restrictive option
Each principle changes how carers should think, speak, and act.
Principle 1 means you start by assuming capacity
The first principle says every adult must be assumed to have capacity unless there is evidence that they lack it for the specific decision.
This is vital in dementia care. A diagnosis may raise a question about capacity, but it does not answer it.
A harmful approach sounds like this:
“She has dementia, so she cannot decide.”
“Dad always gets confused, so I will choose.”
“There is no point asking him.”
“She agreed yesterday but has probably forgotten, so it does not count.”
A better approach sounds like this:
“Let’s check whether she understands this decision today.”
“What support would help Dad think this through?”
“Can we ask in a quieter place?”
“Is this a decision she can make if we explain it differently?”
Assuming capacity does not mean ignoring risk. It means starting from respect. If there is a real reason to doubt capacity, assess it properly.
Signs that a capacity assessment may be needed include:
The person cannot explain the decision in simple terms
They cannot remember the relevant information long enough to decide
They cannot compare options or consequences
They seem to agree with whoever last spoke to them
Their choice changes rapidly without a clear reason
They do not recognise a serious and immediate risk
They are being pressured or influenced
Their decision is very out of character and may cause serious harm
Even then, the task is not to prove the person wrong. The task is to understand whether they can make the decision with proper support.
Principle 2 means you must give practical help first
A person should not be treated as unable to make a decision unless all practicable steps have been taken to help them.
This principle is especially important for people with dementia, because many barriers to capacity are made worse by poor communication.
Support might include:
Using simple words
Giving one piece of information at a time
Writing down key points
Using pictures, calendars, menus, photos, or objects
Checking hearing aids and glasses
Choosing a calm time of day
Allowing extra time
Repeating information without sounding irritated
Offering breaks
Reducing noise and distractions
Asking open questions before yes or no questions
Involving someone the person trusts
Using an interpreter if needed
Considering speech and language support where communication is difficult
The way a question is asked can change the answer. A rushed question in a busy room may produce confusion. The same question asked slowly in a familiar chair, with a written reminder and time to think, may produce a clear decision.
The aim is not to coach the person into the answer others prefer. The aim is to give them a fair chance to make their own decision.
Principle 3 protects the right to make unwise decisions
Everyone makes decisions that others disagree with. People with dementia still have that right if they have capacity for the decision.
This can be hard for carers because they often see the risks clearly. A carer may think:
“If she refuses the walking frame, she might fall.”
“If he keeps giving money to neighbours, he may run short.”
“If she refuses help with washing, her skin may break down.”
“If he keeps going out alone, he could get lost.”
Those worries may be valid. They may require planning, risk reduction, and sometimes professional input. But an unwise decision is not automatically an incapable decision.
The assessment must focus on the person’s decision-making ability, not whether the final choice is sensible.
For example, if a person understands that refusing a walking frame may increase the risk of falling, remembers that long enough to decide, weighs it against feeling embarrassed or restricted, and clearly communicates “I know the risk, but I do not want it in the house”, they may have capacity to refuse.
That does not mean carers do nothing. They might explore alternatives:
A different type of mobility aid
A more discreet frame
A physiotherapy review
Falls sensors
Removing trip hazards
Support when going out
Revisiting the decision later
Respecting capacity does not mean abandoning someone. It means working with the person rather than simply overruling them.
Principle 4 applies when someone lacks capacity
If a person lacks capacity for a specific decision, any act or decision made on their behalf must be in their best interests.
Best interests does not mean what is easiest for the family, cheapest for services, fastest for staff, or safest at any cost. It means considering the person as an individual.
A best interests decision should take account of:
The person’s past and present wishes
Their values, beliefs, culture, and routines
What they would have considered important
Whether they may regain capacity
The views of family, carers, attorneys, deputies, and professionals where relevant
The risks and benefits of each option
The person’s emotional wellbeing, dignity, relationships, and independence
Whether the decision can be delayed until the person is more able to take part
Where possible, the person should still be involved. Lacking capacity for the final decision does not mean having no voice.
For example, someone may not be able to decide complex care arrangements, but they may still express that they prefer female carers, dislike early morning visits, want to keep their cat, or feel calmer when their daughter is present. Those wishes matter.
Principle 5 means choosing the least restrictive option
When making a decision for someone who lacks capacity, choose the option that interferes least with their rights and freedom, while still meeting the need.
In dementia care, there is often a temptation to remove risk by removing choice. Principle 5 asks for a more balanced approach.
For example:
Restrictive option | Less restrictive option to consider |
Stopping all trips outside | Supported walks, door alerts, ID bracelet, familiar route, neighbour check-ins |
Taking away all access to money | Small weekly cash amount, monitored account, spending limits, support with bills |
Moving straight to residential care | Increased home care, day centre, respite, equipment, telecare, family rota |
Locking away all food | Safe snacks within reach, meal prompts, labelled cupboards, support at mealtimes |
Removing the cooker entirely | Gas safety valve, supervised cooking, microwave meals, meal delivery |
The least restrictive option is not always the least risky option. It is the option that manages risk in a way that preserves as much independence and dignity as possible.
How to assess capacity in a clear and fair way
A capacity assessment should feel like a supported conversation, not a test. The person should not be made to feel trapped, examined, or humiliated. The aim is to understand whether they can make the decision, not to catch them out.
The Mental Capacity Act uses a two-stage test.
The first stage asks whether the person has an impairment or disturbance in the functioning of the mind or brain. Dementia would usually meet this stage.
The second stage asks whether that impairment means the person is unable to make the specific decision when it needs to be made.
A person is unable to make a decision if they cannot do one or more of these four things:
Understand the relevant information
Retain that information long enough to decide
Use or weigh the information as part of the decision
Communicate the decision in some way
Communication can include speech, writing, gesture, pointing, facial expression, assistive technology, or any reliable method the person uses.
Start by defining the exact decision
Many capacity problems become confused because the decision is too vague.
“Can Mum live at home?” is broad and emotionally loaded.
A clearer decision might be:
“Can Mum decide whether to accept two care visits each day for the next four weeks?”
“Can Mum decide whether to move downstairs to sleep because she is falling on the stairs?”
“Can Mum decide whether to take the antibiotics prescribed for a chest infection?”
“Can Mum decide whether to give her bank card to a neighbour to buy shopping?”
The sharper the decision, the fairer the assessment.
A good decision statement includes:
What choice needs to be made
Why it needs to be made now
What the realistic options are
What may happen if each option is chosen
Whether the decision can wait
For example:
“Can Ahmed decide whether to accept carers coming in each morning to help with washing and medication, starting this week, because he has missed several doses and has been wearing the same soiled clothes?”
That is easier to assess than “Can Ahmed manage?”
Identify the relevant information
The person does not need to understand every technical detail. They need to understand the information relevant to the decision.
For a medical decision, relevant information may include:
What the treatment is for
What it involves
Main benefits
Main risks or side effects
What may happen without it
Any reasonable alternatives
For a care decision, relevant information may include:
What support is being offered
Why people are concerned
What help the person currently needs
What could happen if they refuse
How the arrangement might affect privacy, routine, independence, and safety
Whether it can be reviewed
For a financial decision, relevant information may include:
How much money is involved
Who will receive it
Whether it is a gift, loan, payment, or withdrawal
Whether the person can afford it
Risks of loss, pressure, or fraud
Whether there are safer ways to achieve the same aim
Keep the information simple and honest. Avoid frightening the person into agreement. Avoid hiding risks to get the answer you want.
Create the right conditions
Before asking capacity questions, check whether the person has the best chance to take part.
Think about:
Time
Is this a good time of day for them? Are they tired, hungry, in pain, or anxious?
Place
Is the setting familiar and quiet? Can the person sit comfortably?
Communication
Do they have glasses, hearing aids, dentures, communication aids, or their preferred language support?
Pace
Can you slow down, pause, and give time to respond?
People present
Would a trusted relative help, or would they unintentionally pressure the person?
Mood
Is the person distressed, embarrassed, angry, or frightened? If so, can the discussion wait?
The best capacity assessment may happen after ten minutes of ordinary reassurance. A cup of tea, a familiar chair, and a calm voice can do more than a long list of questions.
Explain why you are asking
People with dementia may become suspicious or upset if they feel tested. Start with a simple reason.
You might say:
“Jean, I want to talk with you about the morning care visits. I know you have strong views about people coming into your home. I want to understand what you think and make sure we do this properly.”
Or:
“Dad, the doctor has suggested tablets for the infection. Before anyone assumes what you want, I want to check that you understand the choice and hear your decision.”
This sets a respectful tone. It makes clear that the person’s view matters.
Avoid saying:
“We need to see if you have capacity.”
“I’m testing whether you understand.”
“If you cannot answer this, we will decide for you.”
“You keep forgetting, so we have to check.”
Those phrases can make the person anxious or defensive. Anxiety can worsen memory and reasoning.
Ask open questions before closed questions
Yes and no questions can be useful, but they can also mislead. Some people with dementia say yes to please others, hide confusion, or end the conversation. Others say no because they feel threatened.
Start open, then narrow if needed.
Instead of:
“Do you understand that you need carers?”
Try:
“Can you tell me what help Sarah has suggested for the mornings?”
Instead of:
“Do you know what will happen if you do not take the tablets?”
Try:
“What do you think might happen if you decide not to take these tablets?”
Instead of:
“Do you want to stay at home?”
Try:
“What matters most to you about where you live?”
Open questions show whether the person understands in their own words. They also reduce the risk of leading them.
Check understanding without demanding perfect recall
A person does not need to repeat information word for word. They need to grasp the relevant points.
For example, if the decision is about accepting care visits, they may not remember the agency name or exact visit time. They may still understand:
Someone will come in the morning
The person will help with washing and tablets
The reason is recent missed medication and hygiene concerns
Refusing may increase health and safety risks
They can review it after a trial period
Good signs of understanding include:
The person can describe the choice in plain language
They recognise the main concern
They can identify at least basic benefits and risks
Their answers relate to the real decision, not an unrelated worry
Signs of difficulty include:
They cannot say what the decision is about
They believe something factually wrong that affects the decision
They talk only about a past event and cannot return to the present choice
They repeat a phrase without showing understanding
They agree with contradictory statements minutes apart
Check retention in a fair way
Retention does not mean remembering forever. The person only needs to retain information long enough to make the decision.
You can support retention by:
Writing down key points
Using pictures
Repeating information
Summarising after each part
Leaving a note in front of the person
Returning after a short break
A fair retention check might sound like:
“We have talked about two options. One is having a carer in the morning. The other is not having that help. Can you tell me what those two options are?”
Or:
“I wrote the main points here. Can you look at this and tell me what the tablets are for?”
If the person uses the note to answer, that can still count. The law does not require unaided memory. It asks whether the person can retain the information long enough, with support where possible.
Check whether the person can use or weigh information
This is often the hardest part. A person may repeat facts but be unable to weigh them.
Using or weighing means the person can consider relevant information as part of choosing. They do not need to produce a perfect balanced argument. They do need to show some link between the information and their decision.
Helpful questions include:
“What do you like about that option?”
“What worries you about it?”
“What might be good about having help?”
“What might be difficult about having help?”
“What do you think could happen if nothing changes?”
“Why does that choice feel better to you?”
“How would you manage if the same problem happens again?”
“Is there anything that would make the option more acceptable?”
You are looking for signs that the person can compare options in a basic way.
For example:
“I do not like strangers coming in, but I know I forgot my tablets twice. I would try it if the same person came each morning.”
That shows weighing.
By contrast:
“I do not need help. Nothing is wrong. I have never forgotten tablets.”
If there is clear evidence that tablets have been missed repeatedly and the person cannot acknowledge or consider that information, capacity may be in doubt for that decision.
Be careful, though. Denial is not automatically incapacity. People may minimise problems because they feel ashamed, fearful, or protective of independence. Gentle exploration matters.
Check communication
A person can communicate a decision in many ways. Speech is only one method.
Some people with dementia struggle to find words but can still clearly express choice through:
Pointing
Nodding or shaking the head
Writing
Choosing a picture
Reaching for one object rather than another
Using familiar gestures
Facial expression, where the meaning is consistent and clear
The communication must be reliable enough to show a decision.
If speech is difficult, you might use:
Two written options in large print
Picture cards
Objects, such as a medication box or care rota
Simple gesture choices
Yes and no cards
Support from someone who knows the person’s usual communication
Do not assume lack of speech means lack of capacity. Consider speech and language therapy input if communication barriers are significant.
Avoid common mistakes
Capacity assessment can go wrong when carers or professionals rush, lead, or focus on the wrong issue.
Common mistakes include:
Assessing capacity in the person’s worst moment when the decision can wait
Treating memory loss alone as proof of incapacity
Asking only yes and no questions
Giving too much information at once
Using technical language
Confusing disagreement with lack of capacity
Ignoring hearing, vision, pain, or fatigue
Letting family conflict influence the assessment
Failing to record what was asked and answered
Making a broad judgement such as “lacks capacity” without naming the decision
A fair assessment is specific, supported, and evidence-based.
A practical example of assessing capacity in dementia
To make the process clearer, let’s use a realistic example.
The situation
Margaret is 82 and lives alone. She has Alzheimer’s disease. Her daughter, Priya, visits most days and manages shopping and laundry. Over the last month, Margaret has missed several doses of blood pressure medication. Priya has also found spoiled food in the fridge and noticed that Margaret has been wearing the same clothes for several days.
The GP and community nurse suggest a morning care visit each day for six weeks. The visit would help Margaret wash, change clothes, eat breakfast, and take medication. Margaret says, “I do not need strangers poking around. I have always managed.”
The decision is not “Does Margaret have capacity?” The decision is:
Can Margaret decide whether to accept a daily morning care visit for six weeks to support washing, breakfast, and medication?
This is a practical care decision. It affects privacy and independence. It also affects health and safety.
Step 1 is to choose the right time and place
Priya knows Margaret is usually clearer between 10.00 am and midday. She becomes more anxious in the late afternoon. Priya also knows that Margaret hears better when she wears her hearing aids, but sometimes leaves them in the bedroom drawer.
Priya chooses a calm morning. She makes sure Margaret has eaten breakfast, is wearing her glasses and hearing aids, and is sitting in her usual armchair. The television is off. Priya has written three short notes in large print:
A carer could visit each morning for six weeks.
The carer would help with washing, breakfast, and tablets.
The visit can be reviewed if Margaret does not like it.
She also has Margaret’s medication box nearby because it helps make the discussion concrete.
This preparation is part of the assessment. Priya is not manipulating the answer. She is giving Margaret the best chance to understand.
Step 2 is to explain the reason calmly
Priya does not open with, “You clearly cannot cope.” That would likely make Margaret defensive.
She says:
“Mum, can we talk about the morning help the nurse mentioned? I know you like your privacy. I want to understand what you think. The reason people are worried is that some tablets have been missed and you have seemed tired. The idea is someone coming in the morning for six weeks to help with washing, breakfast, and tablets. Then we can review it.”
This explanation is:
Short
Specific
Respectful
Linked to the actual decision
Clear that the arrangement is a trial
Priya then pauses. Silence matters. People with dementia may need longer to process information.
Step 3 is to check understanding
Priya asks:
“Can you tell me what help the nurse is suggesting?”
Margaret says:
“She wants someone to come here. I do not like that.”
That answer shows partial understanding. Margaret knows someone may come to the house, but Priya needs to know whether she understands why and what for.
Priya says:
“That is right, someone coming here. What would they help with in the morning?”
Margaret says:
“I suppose they would check on me.”
Priya replies:
“Yes, checking you are all right is part of it. They would also help with washing, breakfast, and these tablets.”
Priya points to the medication box and the written note.
Then she asks:
“What are people worried has been happening with the tablets?”
Margaret says:
“You think I forget them.”
Priya asks:
“What do you think about that?”
Margaret says:
“I may have missed one. I do not think it matters much.”
This is useful. Margaret understands at least part of the concern. Priya does not argue aggressively or demand admission.
She says:
“I can see why it feels annoying. The medication box showed four tablets left last week, so the nurse is worried it has happened more than once. What do you understand the tablets are for?”
Margaret says:
“My pressure. The doctor said I should take them.”
That suggests Margaret understands the basic purpose.
What Priya is looking for at this stage:
Does Margaret know what the proposed care is?
Does she know why it has been suggested?
Does she know what areas of daily life are involved?
Does she understand the arrangement is for six weeks and can be reviewed?
Does she grasp the basic concern around missed medication and self-care?
Margaret does not need to know the name of the care agency or exact blood pressure numbers. She needs the relevant information.
Step 4 is to check retention
After a few minutes, Priya gently checks whether Margaret can retain the key points.
She says:
“We have talked about a possible morning visit. Can you remind me what the visit would be for?”
Margaret looks at the note and says:
“Washing, breakfast, and tablets.”
Priya asks:
“And how long are we talking about trying it for?”
Margaret says:
“I do not know. Not forever?”
Priya says:
“That is right, not forever. The suggestion is six weeks first, then a review.”
A person can use written notes to retain information. Margaret’s ability to refer to the note supports her involvement. She has retained enough with support to continue the decision-making process.
If Margaret had immediately forgotten the whole topic, even with written prompts, Priya would need to consider whether the assessment could still continue or whether Margaret cannot retain the information long enough for this decision.
Step 5 is to check use and weighing
This is the key part. Priya needs to know whether Margaret can weigh the benefits and drawbacks.
Priya asks:
“What would be good about having someone come in the morning?”
Margaret says:
“Nothing. I do not want it.”
Priya does not treat that as the end of the assessment. Refusal is a decision, but Priya needs to understand the reasoning.
She asks:
“What would you dislike most?”
Margaret says:
“I do not want a stranger seeing me in my nightdress. This is my house.”
That is a relevant concern. It shows Margaret is thinking about privacy and control.
Priya asks:
“What do you think might be helpful about it, even if you do not like the idea?”
Margaret says:
“They might remind me about the tablets.”
Priya asks:
“And what could happen if the tablets keep getting missed?”
Margaret says:
“My blood pressure might go wrong. I might have to see the doctor.”
This suggests Margaret can consider a risk.
Priya asks:
“Can you think of a way to make it less uncomfortable?”
Margaret says:
“If it was the same woman each time. Not a man. And not too early.”
This is a strong sign of weighing. Margaret is not simply refusing or agreeing. She is identifying conditions that affect her choice.
Priya asks:
“So, thinking about privacy on one side, and the tablets and washing on the other, what do you want to do?”
Margaret says:
“I will try it if it is a woman and she comes after 9.30. Six weeks, then I say if I hate it.”
This answer suggests Margaret may have capacity for this decision. She has understood the proposal, retained the main points with support, weighed privacy against health and routine, and communicated a clear decision.
Step 6 is to test consistency without badgering
Priya should not keep asking until Margaret changes her mind. That would be pressure.
But because dementia can affect consistency, it may be reasonable to check later in a light-touch way, especially if the decision is significant and not urgent.
Later that day, Priya says:
“Mum, we talked this morning about trying a morning carer for six weeks, after 9.30, and asking for a woman. Is that still what you want me to tell the nurse?”
Margaret says:
“Yes. But I do not want anyone bossy.”
This is consistent with her earlier decision.
If Margaret had said, “What carer? No one is coming here. I never agreed to anything,” Priya would need to think carefully. A single later change does not automatically prove lack of capacity. Margaret may have changed her mind. But if she cannot remember or understand the decision at all, even with support, it raises a question.
Step 7 is to record what happened
For a significant care decision, Priya should make a clear note. It does not need to be legalistic, but it should include useful evidence.
A good record might include:
The date and time
Where the conversation happened
Who was present
The exact decision being considered
What information was given
What support was used, such as written notes, hearing aids, quiet room
The questions asked
Margaret’s answers in her own words where possible
Any signs of understanding, retention, weighing, and communication
The final decision
Any conditions attached to the decision
Any plan to review
Priya’s note might say:
“Spoke with Mum at 10.30 am in living room. TV off, hearing aids and glasses in place. Discussed proposed daily morning care visit for six weeks for washing, breakfast, and medication. Used written note in large print. Mum said visit would be for ‘washing, breakfast, and tablets’. She recognised concern that tablets had been missed and said blood pressure ‘might go wrong’ if missed. She said she disliked strangers and wanted privacy. She said she would try the visit if the carer is female, after 9.30 am, and the arrangement is reviewed after six weeks. Checked again at 3.00 pm. Mum confirmed this was still her decision.”
This kind of record can help health and social care staff. It also protects the person’s voice.
What if Margaret refused?
The same assessment could lead to a different outcome.
Suppose Margaret said:
“I understand they want someone here for tablets and washing. I know I missed tablets. I know the doctor says that could make me unwell. I still do not want someone coming into my home. I would accept a pill dispenser alarm and Priya ringing me at 10.00 am. I will review it in two weeks.”
That may show capacity to refuse the care visit, even if Priya disagrees. Margaret has understood the proposal, weighed the risks, and suggested an alternative.
By contrast, suppose Margaret said:
“No one has ever suggested care. I do not take tablets. I have never had blood pressure. You are stealing my house.”
Priya gently shows the medication box and written note, but Margaret cannot engage with the information. She becomes convinced Priya is lying and cannot consider the actual decision. In that situation, Margaret may lack capacity for this specific decision at that time, especially if this belief is caused by her dementia and prevents her from understanding or weighing the relevant information.
If the matter is significant, Priya should involve the community nurse, GP, social worker, or memory service rather than making a major decision alone.
What to do when capacity is unclear or the decision is serious
Many real situations are not neat. A person may understand some parts but not others. Their answers may vary. Family members may disagree. Risks may feel urgent. Professionals may be hard to reach. The person may become upset whenever the topic is raised.
When capacity is unclear, slow the process down if safety allows.
Repeat the assessment at a better time
If the decision can wait, try again when the person is at their best.
Before trying again, ask:
Was the person tired or unwell?
Was the room too noisy?
Were too many people present?
Was the information too complicated?
Did the person feel criticised or cornered?
Did pain, hunger, thirst, infection, constipation, or medication affect their thinking?
Would written information, pictures, or objects help?
Would another trusted person be better placed to ask?
A second conversation should not be used to pressure the person into agreement. It should give a fairer chance.
Involve the right professional
For serious decisions, carers should not feel they must carry the burden alone.
Consider asking for professional support when the decision involves:
Major medical treatment
Refusal of essential care
Moving home or care home admission
Deprivation of liberty or significant restrictions
Large sums of money or property
Legal documents
Safeguarding concerns
Possible coercion or undue influence
Strong disagreement between relatives
High risk of harm
Disagreement between the person and professionals
Possible sources of help include:
GP
Community nurse
Dementia specialist nurse
Social worker
Occupational therapist
Psychiatrist or old age mental health team
Speech and language therapist
Advocate
Solicitor
Local authority safeguarding team
Office of the Public Guardian, where attorneys or deputies are involved
The professional responsible for the decision should usually assess capacity for that decision. For example, a surgeon cannot rely only on a family view for consent to an operation. A solicitor must satisfy themselves about capacity for a will or lasting power of attorney. A local authority may need to assess capacity for care and accommodation decisions.
Think about fluctuating capacity
Some people drift in and out of capacity. This can happen with dementia, delirium, mental illness, medication effects, or physical illness.
If capacity fluctuates, ask:
Can the decision wait until the person is more lucid?
Is there a known best time of day?
Can the decision be broken into smaller parts?
Can the person make advance choices while they have capacity?
Can a temporary decision be made and reviewed?
Is urgent action needed to prevent serious harm?
For example, if someone lacks capacity during an infection but may improve after treatment, it may be best to delay a non-urgent care decision. If they need urgent treatment, professionals may need to act in best interests.
Watch for pressure and undue influence
Dementia can make people more vulnerable to pressure. Capacity is not only about memory. A person may understand a decision but be unable to make it freely because someone is intimidating, manipulating, or controlling them.
Warning signs include:
A relative or friend answers every question for the person
The person looks frightened before speaking
Their decision benefits someone else unusually
They give away money they cannot afford
They seem rehearsed
They change their answer when a particular person enters the room
They are isolated from other trusted contacts
There are signs of neglect, threats, or financial abuse
In these situations, speak to a professional. If there is immediate danger, contact emergency services. For non-immediate safeguarding concerns, contact the local authority safeguarding team.
Use best interests carefully when capacity is lacking
If a proper assessment shows the person lacks capacity for the decision, the next step is not “the family chooses whatever they think best”. A best interests process should be followed.
For a carer, that means asking:
What did the person say when they had capacity?
What have they said recently, even if they cannot make the full decision?
What were their values and routines?
What choice would fit their personality and beliefs?
Who should be consulted?
Is there an attorney under a Health and Welfare Lasting Power of Attorney?
Is there a Property and Financial Affairs attorney for money decisions?
Is there a court-appointed deputy?
Are there advance decisions about medical treatment?
Can the person be involved in part of the decision?
Which option is least restrictive?
Best interests should not erase the person. Their past and present voice remains central.
A person who cannot decide whether to move to a care home may still say:
“I want to stay near my church.”
“I do not want to be separated from my partner.”
“I hate being cold.”
“I like being able to see a garden.”
“I do not want to share a room.”
“I need my radio at night.”
Those details should shape the decision.
Remember that safety is not the only value
Carers often carry fear. Fear of a fall. Fear of fire. Fear of wandering. Fear of medication errors. Fear of blame. These fears are real, and carers deserve support.
Still, the safest option may not always be the right option. Capacity law recognises that adults have rights to freedom, privacy, relationships, identity, and choice.
Good dementia care tries to balance:
Safety
Dignity
Independence
Emotional wellbeing
Family relationships
The person’s own values
Practical reality
Least restriction
For example, stopping a person from ever going outside may reduce one risk but create others, such as loneliness, agitation, loss of mobility, and distress. A better plan might involve safer walking routes, tracking technology with consent where possible, neighbour awareness, an ID card, regular accompanied walks, or day centre transport.
The question is not, “How do we remove all risk?” The better question is, “How do we support this person to live as freely and safely as possible?”
A practical checklist carers can use
A checklist cannot replace professional judgement, but it can help carers prepare for capacity conversations and record what happened.
Use this as a guide for everyday decisions or when preparing to speak with professionals.
Before the conversation
Define the decision clearly.
Ask yourself:
What exact decision needs to be made?
Does it need to be made now?
What are the realistic options?
What are the likely benefits and risks?
What information does the person need?
Is this a low-risk everyday decision or a serious decision needing professional input?
Choose the right moment.
Check:
Is the person at their best time of day?
Are they rested, fed, hydrated, and comfortable?
Do they have pain, infection symptoms, constipation, or medication side effects?
Are glasses, hearing aids, dentures, or communication aids in place?
Is the environment quiet and familiar?
Are the right people present?
Prepare support.
Useful tools may include:
Large-print notes
A simple written summary
Photos or pictures
A calendar
A medication box
Clothing, equipment, or objects linked to the decision
A short list of options
A plan for breaks
A trusted person who can support communication without taking over
During the conversation
Start respectfully.
Try:
“I want to understand what you think about this.”
“I am not here to force you. I want to make sure you have the information and that your view is heard.”
“Let’s talk about one thing at a time.”
Give the relevant information simply.
A useful pattern is:
What the decision is
Why it has come up
What the options are
What may happen with each option
Whether it can be reviewed
Then check the four abilities.
Understanding
Ask:
“Can you tell me what this decision is about?”
“What has been suggested?”
“Why do you think people are concerned?”
“What would this option involve?”
Look for:
A basic grasp of the proposal
Awareness of the current issue
Answers linked to the real decision
Ability to correct misunderstandings when explained
Retention
Ask:
“Can you remind me what the two choices are?”
“What did we say this support would help with?”
“Can you look at this note and tell me what it means?”
Look for:
Ability to hold the key points long enough to decide
Use of notes or prompts if helpful
More than a fleeting response with no continuing grasp
Using or weighing
Ask:
“What do you like about this option?”
“What do you dislike?”
“What might happen if nothing changes?”
“What matters most to you here?”
“How are you balancing those things?”
“Is there a way to make this option easier for you?”
Look for:
Some comparison of options
Recognition of relevant risks or benefits
Personal values linked to the decision
Reasoning that connects to the information given
Communication
Ask:
“What do you want to do?”
“Can you show me which option you prefer?”
“Would you like to point to the choice?”
“Is this your decision?”
Look for:
A clear choice through words, gesture, writing, pointing, or another reliable method
Consistency enough to trust the choice
Signs the person is not simply echoing or being pressured
After the conversation
Record the main points.
Include:
Date and time
Decision
Information given
Support provided
Questions asked
Answers given
Your view on each of the four abilities
Final decision
Any disagreement
Any need for professional assessment
Review date if needed
Then act according to the outcome.
If the person has capacity, respect the decision, even if you disagree. Offer support and reduce risk where possible.
If the person lacks capacity, seek or follow a best interests decision-making process. Keep the person involved as much as possible.
If capacity is unclear, pause if safe, try again with better support, and involve professionals.
Phrases that help and phrases that harm
The words used during a capacity discussion can either protect dignity or increase distress.
Helpful phrases | Phrases to avoid |
“Can you tell me what you understand about this?” | “Do you understand, yes or no?” |
“What matters most to you?” | “You have to do this.” |
“Let’s take one point at a time.” | “I have already explained this.” |
“Would it help if I wrote it down?” | “You never remember anything.” |
“What worries you about this?” | “You are being difficult.” |
“Can you tell me why you prefer that?” | “That is the wrong choice.” |
“We can have a break and come back to it.” | “We need an answer now.” |
“Your view matters.” | “We will decide if you cannot.” |
Carers are human. Stress can make anyone sound sharper than they intend. If a conversation goes badly, stop if possible. Try again later with a calmer tone.
When the person becomes distressed
A capacity conversation should not become an endurance test. If the person becomes very upset, frightened, angry, or suspicious, pause.
You might say:
“This feels upsetting. We can stop for now.”
“We do not have to sort it all this minute.”
“Let’s have a cup of tea and come back to it later.”
Distress can be communication. The person may feel loss of control, shame, fear of being moved, fear of strangers, or fear that family are taking over. Those feelings are relevant to the decision and should be taken seriously.
If the decision is urgent, professionals may need to act. If it is not urgent, kindness and timing matter.
Key takeaway for carers
Assessing capacity in dementia is not about catching someone out, proving decline, or winning an argument. It is about protecting the person’s right to make their own decisions wherever they can, and protecting them through best interests decisions when they cannot.
The most useful phrase to remember is:
This decision, at this time, with the right support.
Start by assuming capacity. Give practical help. Do not confuse an unwise choice with incapacity. If the person lacks capacity, act in their best interests. Choose the least restrictive option.
For carers, the heart of the process is simple, even when the situation is hard:
Be specific about the decision
Choose the best time and place
Give information in a way the person can use
Ask open, respectful questions
Look for understanding, retention, weighing, and communication
Record what happened
Get professional help for serious or disputed decisions
Dementia changes how decisions may need to be supported. It does not remove the person’s voice. A good capacity assessment listens for that voice carefully, patiently, and with respect.
