Advance statements and dementia

If you have dementia, you may wish to make an advance statement to express your wishes, feelings and values. Find out why you might make one and how they are different to advance decisions.

An advance statement gives you the option to record your wishes, feelings, beliefs and values. It allows you to express your preferences for a broad range of things such as the type of care you would like in the future.

Find out more about advance statements

An advance statement gives you the option to record your wishes, feelings, beliefs and values.

In the future, this statement can be used by a person to make decisions on your behalf. Advance statements can be called different things, for example ‘statements of wishes and care preferences’. 

If you want to make a decision now about treatments you may receive in the future, you need to create an advance decision.

When do advance statements apply?

Advance statements should be taken into account by anyone making a decision on your behalf in the future.

If a decision maker goes against your wishes, they must record their reasons for going against it (if the advance statement is made in writing). They must be able to justify going against your wishes, if they are challenged.

The Mental Capacity Act 2005 says that if you lack mental capacity to make a decision, then someone acting on your behalf must do so in your best interests. According to the Act, to do that, they must consider your past and present:

  • wishes
  • feelings
  • beliefs and values. 

You might make an advance statement for one or more of the following reasons:

  • It can be reassuring to know that you have given guidance about your wishes, feelings, beliefs and values. An advance statement will help others to make decisions in the future that you are not able to make.
  • It can prompt conversations about your future care with doctors and nurses that you may not have otherwise.
  • It may help to clarify your own thoughts.
  • It may prompt discussions with friends and family about what you want to happen in the future.
  • It can help those close to you to know what you would want to happen if they have to decide or help others decide that in the future. 

Advance statements are not legally binding, and, unlike advance decisions, they do not operate as your own decision if you lack capacity to make decisions about medical treatment in the future.

Instead they help other people make decisions for you if you can’t make them yourself. 

Do doctors and medical professionals have to follow an advance statement?

Doctors and medical professionals do not have to follow an advance statement. However, anyone connected with your care and treatment must take an advance statement into account when making decisions about these.

This includes doctors, nurses, all other health and social care professionals, family and friends, and if you have one, your attorney under a Lasting power of attorney.

They should try to follow the advance statement where possible, and if they don’t, it must be because they have a good reason.

If it’s a written advance statement, any decision maker should record their reasons for going against your wishes, and explain why if challenged.

An advance statement can be made verbally, for example you could explain your wishes and preferences to a family member or a friend.

However, it’s a good idea to create a permanent record. Some people have made audio or video recordings of themselves explaining their wishes.

The Mental Capacity Act 2005 says that particular consideration should be given to written statements, so if you can it’s a good idea to write your statement down.  

What information should you include in an advance statement?

You can use an advance statement to express your wishes on future care options, such as where you wish to live, or the type of care and support you wish to receive.

You could also use it to express other wishes and preferences not directly related to care, such as the food you would like, your moral or political views, what activities you enjoy and what is important to you. 

You can also cover more difficult topics if you wish. For example, whether you’d prefer to die at home or in a hospital. It can be very useful to explain how you would balance quality of life against length of life.

For example, some people wish to live for as long as possible regardless of the quality of their life. For others the quality of their life is the most important factor.

What if you change your mind about an advance statement?

You can change any advance statement that you make at any time. If you have made a written advance statement you must make sure that all copies have been updated. 

For more information on planning for the future and a template for an advance statement, see Planning ahead.