Dementia, advance decisions and advance statements

Planning ahead with dementia

If you have been diagnosed with dementia, there will likely 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. 

As dementia progresses, you may lose the mental capacity to decide how you are cared for. This includes what medical treatment you receive, as well as care and treatment at the end of your life. 

You might not want to talk about how you want to be cared for in the future, particularly at the end of your life. Many people find this difficult to talk about. But there are ways you can tell other people about what you want for your care and treatment in the future.

Advance decisions and advance statements are two ways of planning for how you are cared for and treated in the future. 

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 is a very specific document. It isn’t something everyone wants to make. It can make sure you are not given treatment in the future that you do not wish to receive. It only applies when you lack mental capacity to make that decision at the time. 

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. It can help people understand your personal values and beliefs. It is not legally binding, but must be used by doctors, family members and anyone else who has to make a decision on your behalf. 

Discussing your wishes with professionals involved in you care

You can always ask to discuss how you want to be cared for or treated in the future with health and social care professionals. That might be your: 

• GP
• consultant
• nurse
• social worker

You could ask your GP for an appointment specifically to discuss future care, so they know in advance. 

Professionals can record your wants and wishes in your medical records and/or your care plan. They can also make a note if you have made a Lasting power of attorney (LPA), an advance decision or an advance statement. 

Help with other forms 

Some doctors may encourage you to discuss future care planning. They might suggest you complete a form with them that records your preferences. Different forms with different names are used in different places – it can sometimes be quite confusing. For example, some hospitals have their own forms, such as a ‘Preferred Priorities for Care’ form. Don’t worry about what it is called. 

ReSPECT form 

The ‘ReSPECT’ form (Recommended Summary Plan for Emergency Care and Treatment) is becoming more common for use in an emergency. This is completed by you and a doctor together. It records: 

• your current state of health and how it is likely to change
• you care goals in the event of a future emergency
• whether you prioritise comfort or prolonging life
• care and treatment that should or should not be given (this can include CPR)
• whether you have made an advance decision, an advance statement, an LPA for health and welfare, or other advance care plan

Like other types of care plan, a ReSPECT form is not legally binding. However, it gives guidance to medical teams about how you should be treated in an emergency if you cannot decide for yourself. 

Keeping your plans clear and up to date 

Even if you don’t write anything down, thinking about your future care can still be helpful. 

You can still share your wants for the future. Think about having a conversation with your family or close friends and tell them what you want to happen so they can try to make sure your wishes are respected. 

Be consistent 

If you plan ahead in more than one way, it is important to be consistent so it is clear what you want to happen.  

Review your plans 

It’s also a good idea to review any plan you have made from time to time and particularly if your circumstances have changed.

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

Some 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.

Doctors, care professionals and others can make decisions for you

Professionals, such as doctors, 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. They should only make the decision on your behalf if you cannot.