Dementia, advance decisions and advance statements

Planning ahead with dementia

If you have been diagnosed with dementia, it is likely that there will come a time when you aren’t able to make some decisions for yourself. The ability to make a specific decision is called having ‘mental capacity’ to make that decision.

Advance decisions and advance statements are two ways of planning for how you are cared for and treated when you may not be able to make these decisions yourself. They work differently and are designed to do different things.

You can make both an advance decision and an advance statement, and you don’t have to make either. Doing both will give others the fullest picture of your wishes.

This information is for people living in England and Wales. For more information about this in Northern Ireland, see Financial and legal tips. 

What is an advance decision?

An advance decision allows you to refuse a specific medical treatment in particular circumstances. It only applies when you lack mental capacity to make that decision. It can make sure that you are not given treatment in the future that you do not wish to receive.

If made correctly, your advance decision is legally binding and must be respected by those treating you.

What is an advance statement?

An advance statement is an expression of your wishes for the future. It can cover a much broader range of topics than an advance decision, including requests and refusals for certain types of treatment and care. It can help people understand your personal values and beliefs. It is not legally binding, but should be taken into account.

What happens if you haven’t made an advance decision or advance statement?

Many people prefer not to make an advance decision or an advance statement. Instead, they rely on professionals to make treatment decisions in their best interests.

An attorney can make decisions on your behalf

If you don’t make either an advance decision or an advance statement you can still make a Lasting power of attorney (LPA) for health and welfare. This would allow your attorney(s) to make decisions about your care and treatment on your behalf, acting in your best interests.

Those decisions could include the refusal of life-sustaining treatment if you say so on the LPA form. It is always helpful to talk openly and honestly about your wishes with your attorney(s). They can then be as sure as possible that they will make the right decision for you, if you cannot make it yourself.

Doctors, care professionals and others can make decisions for you

If you don’t make an LPA, anyone (such as a doctor) making a decision about your care or treatment on your behalf must still do what they can to take into account your past and present wishes, feelings, beliefs and values.

They should ask those close to you about what those might be. They should also do what they can to help you make the decision yourself if that is possible, and should only make the decision on your behalf if it is not.