Dementia Gateway: Making decisions

Advance care planning

Edited by David Thompson and Karen Harrison Dening, consultant Admiral Nurse.

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

A person with dementia

Explore the links below now to read more about this topic:

• 1. Introduction Open

  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.

  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.

• 2. What is advance care planning? Open

  'Advance care planning' means people thinking about, discussing and recording their wishes and decisions for future care, in order to come up with an 'advance care plan'. 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 to 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 plans – many people are not aware of them. 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.

  There are three parts to advance care planning:

  • making statements about future needs and wishes
  • advance decisions to refuse treatment
  • Lasting Powers of Attorneys

  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 should only contain decisions that the person was able to make themselves.

• 3. Statements about future needs and wishes Open

  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 or it might be attached to a care plan.

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

  • I would want to stay in my own home as long as possible.
  • I would want to be supported with personal care by only women.
  • I would want to continue to have a glass of wine with my evening meal.
  • I would want to keep to a strict halal diet.
  • I would want to get out as much as possible. I would especially like to carry on going to garden centres and my church.
  • I would not want to share a room if I move to a care home and I would want to bring my photos and music.
  • I would want any treatment that could reduce the effects of dementia.
  • I would want you to involve my same sex partner and daughter in my decisions.
  • I would not want my father visiting me and being involved in my decisions.
  • I would not want religious people visiting me when I am dying.

  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, or use the bathroom. Another reason could be that their family carer can't cope with the person being at home, even with support.

• 4. Advance decisions to refuse treatment Open

  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:

  • I would not want a blood transfusion because of my religion.
  • I would not want any further chemotherapy for my cancer.

  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.

  Advance decisions to refuse treatment must be written down, signed and witnessed if the person wants to refuse life sustaining treatment (for example artificial nutrition such as PEG 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 to refuse treatment. This means signing to say that you saw the person sign the statement. You should not witness an advance decision to refuse treatment if you don't think the person is able to make the decision when they are signing.

  It is a good idea for doctors to be given a copy of any advance decisions to refuse treatment.

  Doctors must follow advanced decisions to refuse treatment unless there are grounds to believe the person did not have capacity to make the decision at the time, or new treatments may have changed the decision made by the person.

  People can change their mind about advance decisions to refuse treatment. To do this they could tell people, tear up any old advance decisions to refuse, or write down what they now would want.

• 5. Lasting Power of Attorney Open

  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. Before the Mental Capacity Act people could only do this for decisions about their money and property. Now these arrangements can also cover decisions about health and care.

  Making a LPA is different to making a Will. Wills says who will sort out (executors) and will happen to a person's money and property only after they have died.

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

  There are two types of lasting powers of attorney: one relates to property and affairs, the other to personal welfare.

• 6. Lasting Power of Attorney: Property and Affairs Open

  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 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 can 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.

  LPAs have to be registered with the Office of the Public Guardian. Once a 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.

• 6. Lasting Power of Attorney: Personal Welfare Open

  This allows the person with dementia to choose people to make decisions about their health care and welfare. This includes making decisions about medical treatment and where they live. Unlike LPAs for property and affairs, the attorney can only make decisions on a person's behalf when they can no longer make that decision 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. It is important that people considering this type of LPA talk with any person who they are thinking of making their attorney.

• 7. How Lasting Powers of Attorney are made Open

  Making a Lasting Power of Attorney means filling in forms. There are two sets for the two different LPA and you can get them free from the Office of the Public Guardian.

  The person writes on the form who they want to be their attorney. Both people 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.

  Once the forms are filled in they have to be sent to the Office of the Public Guardian to be registered. This costs £120 for either 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.

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