Who makes the decision to move a person with dementia into a care home?

Ensuring the person with dementia is at the centre of the decision to move into a care home

If the person is capable of making the decision, they must choose themselves whether or not they move into a care home. In this case, nobody can decide for them. 

If they need support to do this, they should be offered it. For instance, you could present the options in pictures if the person would understand that better than words.

You may worry about what the person’s decision will mean for you, if you do not feel able to care for them yourself. It’s important to be aware that you can’t be forced to provide care for the person, at home or anywhere else. It can be hard to say no, but this is always a choice you are free to make.

If the person chooses not to go into a care home and you cannot provide the care they need, you may be able to arrange care for them at home (if they agree). This might be arranged privately or through the local authority or trust, depending on the person’s finances. 

A small number of people may qualify to receive NHS continuing healthcare at home, but that is rare. That would not depend on the person’s finances.

If the local authority or trust is arranging care, they may take into account the amount of help the person has from those close to them. They can only do this if the carer is able and willing to provide that care. Tell the local authority or trust if you do not feel that you can.

These situations can be very hard, especially if you feel that the person’s needs would be best met in a care home or if they refuse to accept care at all. It can be particularly difficult if you and the person live together. In these cases it can be a good idea to involve the local authority or trust.

If the person is neglecting themselves, the safeguarding team at the local authority or trust also have to be involved.

If the person is unable to make decisions 

Often, by the time the person with dementia needs the level of care provided by a care home, they do not have the ability to make this decision for themselves. The ability to make these decisions is also known as ‘mental capacity’. 

If they lack mental capacity to decide, another person or group of people will need to make this decision for the person. This might be an attorney, deputy, family members, professionals or a combination of these.

When this happens, the person or people making the decision must always act in the best interests of the person with dementia. They should:

• Try to identify any issues that the person would take into account if they were making the decision themselves
• Involve the person as far as possible
• Not prioritise their own personal preferences or circumstances above what is best for the person with dementia.

The ability or willingness of carers to provide care themselves will be relevant in deciding how best the person can be cared for.

Making the decision may also involve consulting others about the most appropriate care for the person. This might mean talking to carers, loved ones, or healthcare or legal professionals.

Acting in the person’s best interests also involves making sure that their freedom is restricted as little as possible. For more information, see Deprivation of Liberty Safeguards.

Discussing moving into a care home with the person with dementia

The person with dementia is likely to have feelings about what type of care they would like, even if they don’t have capacity to decide themselves. They may also have expressed wishes in the past. 

It’s important to involve them in the discussion as much as possible. The person’s preferences – past and present – should be taken into account by anyone making a best interests decision on their behalf.

It can be difficult to talk about future care needs. Gently raise the subject of moving to a care home to find out how the person with dementia feels about it. Try to find out what concerns they might have and consider ways to help. 

For example, if the person is worried about losing privacy in a care home, let them know that they would have their own room. If people will be able to visit, you could reassure them that they will see friends and family regularly.

Sometimes the person with dementia may not recognise that they need extra support, due to denial or lack of insight into their condition. It can be helpful to talk about the benefits of moving into a care home, rather than convincing them that they are having difficulties. For example, you could say they will not have to worry about housework or cooking.

What if there's disagreement over moving the person with dementia into a care home? 

You may disagree with the decision made by the person’s attorney, deputy or controller, or by a health and social care professional. This could be the case if you feel that their decision is not in the best interests of the person with dementia. 

Equally, someone like a social worker may disagree with a decision that you yourself have made.

It is best to try and resolve any disagreements through a discussion, but if that fails, it is possible to challenge the decision:

• If someone has concerns about an attorney, deputy or controller, they can speak to the Office of the Public Guardian in England and Wales, or the Office of Care and Protection in Northern Ireland. 
• If they have concerns about health and social care professionals, they should speak to the organisation they work for. The organisation will have its own complaints process to follow. If it is not possible to resolve the issue that way, a complaint can be made to an ombudsman. This is a public official who looks into complaints. Which ombudsman to use will depend on the organisation being complained about. This should be explained in the organisation’s complaints process. 

Another option is to get legal advice to see if there is any legal action that can be taken. This would normally have to be arranged and paid for privately. In England and Wales, the Court of Protection decides what is in the person’s best interests if they lack mental capacity to decide themselves. In Northern Ireland, the Office of Care and Protection does this.