Making decisions for a person with dementia who lacks mental capacity

If a capacity assessment shows that a person with dementia lacks the capacity to make a certain decision but the decision needs to be made at that time, it must be made for them.

When a decision is made for a person who is not able to make that decision, it must always be made in the person’s ‘best interests’.

What does it mean to make a decision in someone's best interests?

When a decision is made in someone's best interests, this makes sure that: 

• the person’s rights are respected
• the decision is the best one for them.

A decision should never be made in the best interests of anyone other than the person themselves. For example, a decision should never be made to make things easier for a carer or professionals who are caring for the person.

A number of things should be considered for a decision to be made in a person’s best interests. The best interests checklist can help people decide what is in someone's best interests.

Best interests checklist: 5 things to consider when making a decision for someone with dementia

• Consider whether the person will have capacity later and whether the decision can be put off until then. This is crucial because a  person with dementia may have good and bad days. They may be able to make the decision on another day.
• Encourage and support the person with dementia to take part in making the decision and to share their views, where possible. Consider the person’s past, present and future wishes and feelings.
• Take into account other people’s views, such as carers, friends, family members and any attorney or deputy the person may have. Note that decisions can’t simply be based on the person’s age, their behaviour or the fact that they have dementia (or any other condition).
• Take into account all the relevant circumstances when making a decision – for example, what things the person would have considered if they’d been able to make the decision themselves.
• If the decision involves life-sustaining treatment, there are other special issues that need to be considered. For example, checking whether the person has made an advance decision, considering all the possible treatment options, and not being motivated by a desire to end a person’s life. If there is any doubt about the person’s best interests, the case should be referred to the Court of Protection for it to decide (see ‘Other resources’ for contact details).

Who should make decisions for someone with dementia who lacks mental capacity?

The type of decision that needs to be made will affect who should make the decision. The following list has examples about who can make certain types of decisions for a person with dementia:

• Everyday decisions about washing, dressing, eating or activities – whoever is with the person at the time can make these decisions, such as a carer, family member or care worker.
• Complicated decisions about finances or property – if the person has an attorney or deputy for property and financial affairs, they will make these decisions.
• Complicated decisions about where the person will live, their care or treatment – if the person has an attorney or deputy for health and welfare, they can make the decision. If not, a professional such as a social worker or doctor will make the decision.
• Decisions about life-sustaining treatment – if the person has appointed an attorney for health and welfare and given them this power,  the attorney they may be able to make the decision. If the attorney can’t make the decision then it will be made by an appropriate doctor or consultant.
• If there isn’t someone who knows the person with dementia well, the local authority (council) may appoint an independent mental capacity advocate (IMCA) to speak on the person’s behalf. This will happen when a major decision needs to be made, such as whether the person should move to a care home or have serious medical treatment. An IMCA is also sometimes involved if there is conflict between family members.

Should the person with dementia be consulted when the decision is being made?

The person has a right to be involved in decisions that are made about them (unless that’s inappropriate, for example if someone refuses to be consulted). This is very important. Just because someone can’t make the decision themselves, this does not mean that they won’t have preferences and feelings about what they would like to happen.

Should the family and carers of the person with dementia be consulted?

Family members, friends and carers also have a right to be consulted and involved in the decision, where appropriate. This is important and can be helpful because they often know the person best. They can say what they think is in the person’s best interests, as well as what the person’s preferences and views are.

What if the decision is complicated and the person with dementia lacks mental capacity? 

There may be a ‘best interests meeting’ if the decision is more complicated, such as decisions about where the person will live. This isn’t always needed.

However, when it is, a meeting can be a good way to consider all the different issues involved in the decision. This includes the views of the person and their family members.

Sometimes family members or the person’s representatives will be invited to the best interests meeting. If family members disagree, the views from both sides of the argument should be taken into account. 

At other times, family members won’t be invited to the best interests meeting. Often, the person themselves is not invited to attend. If the person and their family are not invited, their views should still be considered during the meeting.

How this is done will depend on the situation – for example, they could offer their views in writing or through someone else, such as an IMCA. Or the person with dementia or their carer could meet with a professional before the meeting to share their views.