Advance care planning in dementia

Booking holidays, paying into a pension scheme and making a will – these things force us to think ahead. The Mental Capacity Act allows us all to make plans for the future. This includes saying how we would like to be supported and who should make decisions if we lose the capacity to make those decisions ourselves.

My daughter is very special to me. I want her there at the end.

A person with dementia

People in the early stages of dementia should be supported to make as many decisions as possible to ensure their future care and support best matches what they would want.

What is advance care planning?

'Advance care planning' means people thinking about, discussing and recording their wishes and decisions for future care. It is about people planning for a time when they may not be able to make some decisions themselves. This is why it is very important for people with dementia.

Advance care planning involves people making plans about what they want to happen while they are alive. This is different from people making plans about what should happen when they die.

People may need support to make advance care plans. This support could come from family, friends, care staff or doctors.

You should not assume that people already know about advance care planning. Remember too that advance care planning discussions with a person with dementia will take time. It is unlikely that a one-off conversation or meeting will cover everything. Also remember that people can change their minds about such things.

There are three parts to advance care planning:

People don't have to do all of these, or they may want to do them at different times. For people at the early stages of dementia, they may have capacity to do some parts of advance care planning but not others. If a person lacks capacity to do some parts of advance care planning they cannot be completed by others in their best interests. Advance care plans can only contain decisions that the person was able to make themselves, though these plans can include giving other people powers to make decisions, through a Lasting Power of Attorney.

Statements about future needs and wishes

People can say what they would like to happen if they lose capacity to make decisions in the future. This can cover care, support and treatment. These are sometimes called 'advance statements'.

While these statements don't need to be written down, it is best to do this. It is also important to decide the best place to keep these statements so that the right people can refer to them when needed. For example, the GP could keep a copy as could a relative or friend, and it might be attached to a care plan.

Here are some examples of statements people might make in case there is a time in the future when they can't make these decisions:

While an advance statement of wishes is not legally binding, where possible these wishes should be complied with. There would need to be good reasons why, later on, a best interests decision was made that meant the wishes of the person with dementia had not been followed. Remember, best interests decisions must take into account the person's views and wishes as much as possible – including those made in advance.

Often people tell others that they want to stay in their home and not move to a care home. This is an advance statement, but it may not always be possible to follow this. For example, it may no longer be in a person's best interests to stay in their home because their physical disabilities mean they cannot get in or out safely, or use the bathroom without unacceptably high risks.

Advance Decisions to Refuse Treatment

Some advance statements could be about medical treatments that a person would not want, were they to lose capacity to make decisions about these in future. These are called 'Advance Decisions to Refuse Treatment'. They have a special status in law.

Some examples include:

Like other advance statements they do not always have to be written down. If a person with dementia tells a member of the care team what treatment they would not want, it is a good idea for them to make a note in the person's records, and share this information in best interests decision-making meetings.

Advance Decisions to Refuse Treatment must, however, be written down, signed and witnessed if the person is refusing, in advance, a treatment that might keep them alive (for example, a blood transfusion, artificial nutrition such as PEG (percutaneous endoscopic gastrostomy) feeding or attempts at cardio-pulmonary resuscitation). The person must also make a statement which shows they understand that the decision to refuse the treatment may put their life at risk.

People who are physically unable to sign their name can still make advance decisions to refuse life-sustaining treatment. For example, a person paralysed from the neck down can tell someone to sign on their behalf. The witness would then sign to say this had happened.

Care staff can witness advance decisions. This means signing to say that you saw the person sign the statement. You should not witness an advance decision if you don't think the person is able to make the decision when they are signing.

It is good practice to make sure that the person's GP has a copy of any Advance Decisions to Refuse Treatment.

Doctors must follow advanced decisions to refuse treatment, if they refer to the treatment being suggested, unless there are grounds to believe the person did not have capacity to make the decision at the time, or it is likely that new treatments may have changed the decision made by the person.

While people have the mental capacity, they can change their mind about Advance Decisions to Refuse Treatment. It is up to them to make sure that the right people know about the changes. To do this they could tell people, tear up any old Advance Decisions to Refuse Treatment, and write down what they now would want.

Lasting Power of Attorney

Any one of us can give named individuals the power to make specific decisions on our behalf, if there comes a time when we are unable to make them ourselves.

This is called making a Lasting Power of Attorney (LPA). A person chosen to make the decision is called an 'attorney'. A person may choose more than one attorney. Most often attorneys will be family members. They might also be friends, or solicitors.

Attorneys must make decisions in the person's best interests. If you think an attorney is not doing this you should report it to the Office of the Public Guardian.

There are two types of Lasting Power of Attorney: one relates to property and affairs, the other to health and welfare.

Lasting Power of Attorney: property and affairs

This lets people choose who they want to make decisions about their money and property.

It is a very good idea for people at the early stages of dementia to do this – especially those who have any savings, a private pension, or who own their home. Otherwise, when they are unable to manage this themselves, there may be no one who can access their money to pay bills and so on. If this happens it might be necessary to go to the Court of Protection for someone (a deputy) to be appointed who can do this. This is a much more expensive process than making a Lasting Power of Attorney (LPA). It also means that someone else is deciding who manages the person's money, rather than the person themselves. Wills cannot help here; they only cover what happens to a person's money after they have died.

It is possible for a person with dementia to make an LPA after they have lost capacity to make some decisions about money. This is because deciding who they trust to look after their money is a different decision. Here's an example: Joe gets very confused trying to work out what to do with his investments. He has the mental capacity to decide that he wants his wife and son to be joint attorneys to manage his financial affairs, and with the help of his solicitor completes the paperwork.

LPAs have to be registered with the Office of the Public Guardian. Once an LPA for property and affairs is registered, the attorney can manage the person's money even if the person still has capacity. For example, this could be helpful if the person has to spend time in hospital and is unable to keep up with paying their bills.

Lasting Power of Attorney: health and welfare

This allows the person with dementia to choose people to make decisions about their health care and welfare. It includes making decisions about medical treatment and where to live – indeed it can cover whatever health and welfare decision the person wants it to. Unlike LPAs for property and affairs, the attorney can only make decisions on a person's behalf when they can no longer make those decisions themselves.

It is a big responsibility to be this kind of attorney. For example, the attorney – not a doctor – will decide what medical treatment a person has or doesn't have. The attorney must, just like health or social care professionals, make sure they are acting in the person's best interests (see the feature on Making decisions in a person's best interests in this section).

The attorney must understand their responsibilities before agreeing to undertake this important role.

How Lasting Powers of Attorney are made

Making an LPA means filling in forms. There are currently separate sets of forms for the two different LPAs and you can get them from the Office of the Public Guardian, or from GOV.UK.

The person writes on the form who they want to be their attorney. Both people – the person and the attorney – have to sign the form in front of a witness.

Someone else then has to sign to say that the person had capacity to make a decision about having an attorney – this might be a doctor, social worker or solicitor, but can be someone else who has known the person for at least two years.

Once the forms are filled in they have to be sent to the Office of the Public Guardian to be registered. This costs £82 for each LPA.

If someone says they are an attorney for a person with dementia you should ask to see proof - this is a form stamped by the Office of the Public Guardian. You can also check with the Office of the Public Guardian.

Remember that a property and financial affairs LPA doesn't give the attorney the right to make health and welfare decisions on behalf of the person who has dementia and now lacks capacity decide how to keep safe, and a health and welfare LPA doesn't give the attorney the right to make financial decisions.

Downloads

All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:

Available downloads:

  • Activity: Advance care planning
  • What the research says: Making decisions