Mental capacity and decision-making for people with dementia

Mental capacity is a legal term that refers to whether someone is capable of making informed decisions. A person with dementia is likely to lose capacity over time, so it is important to know what to do in this situation.

Loss of mental capacity in a person with dementia

Because dementia is a progressive condition, most people with the diagnosis reach a point where they cannot make their own decisions, for example about their health, care, finances and living arrangements. This is called loss of capacity.

To have capacity, a person must be able to:

• understand the information relevant to the decision they are making
• retain that information for long enough to make the decision
• weigh up the information as part of their decision-making process
• communicate their decision to others – this does not have to be verbal; for example, nodding, blinking or hand gestures may all count

When a person loses capacity, family members, friends or professionals such as a doctor, social worker or solicitor may need to make decisions for them.

Capacity can fluctuate – for example, a person might lose capacity due to an illness like delirium (sudden, intense confusion) but regain it when they recover. They may also have capacity to make some decisions (eg what to buy from the shops) but not others (eg whether to sell their home).

How to tell if a person with dementia has capacity

As a family member, you can assess whether the person with dementia has capacity, but you must follow the Mental Capacity Act Code of Practice, which says:

• The person must be assumed to have capacity unless it is established that they do not have capacity
• The person must not be treated as unable to make a decision unless all practicable steps to help them do so have been taken without success
• The person is not to be treated as unable to make a decision simply because they make an unwise decision
• Any decision made for a person who lacks capacity must be in their best interests
• The decision must be made in the way that is least restrictive of the person’s rights and freedom

You might have an opinion about whether the person is able to make informed and safe decisions, but this is not a legal assessment of capacity; and making a decision that you disagree with does not necessarily mean they lack capacity. You must have ‘reasonable belief’ that they lack capacity according to the Mental Capacity Act, and be able to objectively explain your reasons to anyone who queries it.

Formal assessments of mental capacity for a person with dementia

If you are in any doubt about a person’s capacity, you can ask a professional to carry out a formal assessment of mental capacity. This is particularly important for major decisions like whether the person should move into a care home or sell their own home.

A formal assessment of mental capacity can be carried out by a professional such as a GP, social worker for decisions about health or care; or a solicitor for legal or financial decisions. They must consider two questions:

1. Does the person have an impairment or disturbance in the functioning of their mind or brain?
2. Does that impairment or disturbance mean they are unable to make the specific decision in question?

A formal assessment of mental capacity only covers the specific decision being made at that time – eg whether the person should receive an immediate medical treatment. If there are further decisions to be made, each will need a separate assessment.

The professional carrying out the assessment should keep a written record of the assessment and outcome.

Planning for a time when the person with dementia lacks capacity

When someone is diagnosed with dementia, they should be encouraged to start planning for the future as soon as possible. If the person has only recently been diagnosed or has young onset dementia (where symptoms develop before the age of 65) this may not seem urgent, but it is impossible to predict how quickly their condition will progress. Considering future plans early will make managing their care and finances less complicated and ensure their wishes are considered if they later lose capacity.

These plans should include:

An advance care plan (ACP): this sets out the person’s wishes for their medical and personal care, including long-term care like moving into a nursing home. It is not legally binding but will help the people involved in the person’s care to make decisions in their best interests.

An advance decision: a legally binding document where a person decides to refuse certain medical treatments in the future if they cannot communicate their wishes at that time. It is also known as an advance decision to refuse treatment (ADRT) or a living Will and includes life-sustaining treatment like CPR, ventilation and antibiotics.

Lasting power of attorney (LPA): a legal process where the person appoints someone trusted to make decisions on their behalf. There are separate LPAs for health and welfare, and property and financial affairs. Without an LPA, you may not legally be allowed to make decisions on the person’s behalf – even if you are their next of kin. You may have to apply to the Court of Protection to become the person’s ‘deputy’, which can be a complicated process.

A Will: this ensures the person’s money and other assets like property are left to the people and causes of their choosing after their death. It can be very difficult to make or change a Will on behalf of someone who has lost capacity, so it is important for them to make their Will as soon as possible. Dementia UK has free Will-writing offers for anyone wishing to make or amend a Will.

Who can make decisions for a person with dementia who lacks capacity?

If a person with dementia has lost capacity, other people may have to make decisions on their behalf in their best interests. A ‘best interest meeting’ should be arranged which includes the person themselves if possible, their family/friends, health and social care professionals and anyone else who is actively involved with supporting them. Family and friends can only legally make decisions if they have been nominated in the person’s LPA.

Every attempt should be made to find out the wishes of the person with dementia. If they have an ACP, this should be taken into account.

Best interests decisions should always be the least restrictive option possible. For example, if the person wishes to go out for walks but they are vulnerable and would be at risk, the least restrictive option would be for someone to accompany them, rather than deciding they cannot go out at all.

Some decisions, such as selling the person’s home or moving into residential care, can be very difficult and may cause disagreements with the person with dementia and/or family members. The best outcome is where everyone involved comes to a consensus about the best interests of the person with dementia.

Where there is a dispute, the person can access an independent mental capacity advocate (IMCA) to support them to communicate their wishes.

Deprivation of Liberty Safeguards (DoLS) for a person with dementia

Deprivation of liberty refers to a person having their freedom restricted for their own safety and being under continual supervision and control – for example in hospital or a care home. Deprivation of Liberty Safeguards (DoLS) ensure that the restrictions are appropriate and proportionate.

It is only legal to deprive an individual of their liberty by placement in a care home or hospital if:

• it is in their best interests and necessary to protect them from harm
• there are no alternative less restrictive care options

Before someone is deprived of liberty, a mental health assessor must check if they lack capacity. They and a best interests assessor (usually a social worker, nurse, psychologist or occupational therapist) will then discuss whether deprivation of liberty is in the person’s best interests. The outcome can be challenged by anyone who feels the decision is wrong.

Sources of support

To speak to a dementia specialist Admiral Nurse about capacity and decision-making or any other aspect of dementia, please call our Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org.

Alternatively, you can book a phone or video appointment in our virtual clinic.