Dementia Gateway: Making decisions

Making decisions in a person's best interests

When the day comes that I have got to start asking for help… I would like to think that I could still be consulted and still have some say.

Person with dementia quoted in My name is not dementia (Alzheimers Society 2010)

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

• 1. How best interest decisions must be made Open

  Where it has been decided that a person with dementia is unable to make a decision for themselves, care staff must do what is in the person's best interests. This is known as a 'best interests decision'.

  When deciding what is in the person's best interests you need to:

  • Involve the person in the decision as much as possible. Find out what their views and wishes are (including those they had before they lost capacity to make the decision). Where possible involve the person is at meetings where decisions are being made about them.
  • Talk to people who know them well: this could include family and friends, but also those care staff who have a good knowledge of the person.
  • Try to limit restrictions on the person. For example, if the person doesn't understand the risks of going out by themselves, make sure they still have opportunities to do this with the necessary support.

• 2. Decisions about health treatment Open

  Doctors and sometimes nurses are responsible for deciding whether people with dementia can make decisions about their treatment. This includes any treatment for the dementia as well as all other health issues. If they find that the person is unable to do this, they then have to decide what would be in their best interests.

  Doctors should speak to care staff who know the person well when they make best interests treatment decisions. This is in addition to family and friends.

  Care staff may be able, for example, to say:

  • what the person's views and wishes are, including things they may have said before they developed dementia or at an earlier stage of dementia
  • which family and friends need to be involved
  • how the person would cope with injections or other forms of treatment.

  The Mental Capacity Act allows people to make 'advance decisions to refuse treatments'(see the feature on 'Advance care planning' in this section).

  Doctors must comply with advance decisions to refuse treatment unless it is found that the person lacked capacity to make the decision at the time the statement was made. The only other exception is if new treatments have come in which may have affected the person's decision had they known about them at the time. 

  When serious medical treatment decisions have to be made in someone's best interests, and the person does not have family or friends who can represent them, the person must be supported by a special kind of advocate: an Independent Mental Capacity Advocate (IMCA).

  In some cases a person with dementia may have given power to someone else to make their health decisions. This is called a Lasting Power of Attorney for personal welfare (see the feature on 'Advance care planning' in this section).

• 3. Care staff supporting people with dementia with medical treatment Open

  While care staff will not make decisions about what treatment a person with dementia has, they are often involved in giving the treatment – for example, supporting the person to take medication or to apply cream.

  When this happens care staff must have a reasonable belief that either:

  • the person has asked for help with their treatment or
  • the person lacks capacity to make a decision about the treatment and it is being given in their best interests.

  If a doctor has prescribed the treatment to a person with dementia, this would be enough basis for care staff to have a reasonable belief that the treatment is in the person's best interests (for more on this idea of a 'reasonable belief', see the feature on 'Capacity: can the person make the decision?').

• 4. Decisions about where the person lives or stays Open

  Decisions about staying at home, going into hospital or moving to a care home are often made for people with dementia. Where possible, the person must be supported to make these decisions themselves.

  These are very important decisions so a lot of care must be taken to check whether the person can make the decision themselves before making a decision in their best interests. Usually social workers, care managers or doctors will assess capacity. At times it may be necessary for someone else to check the person's capacity if it is unclear. This could be an experienced social worker, psychologist or psychiatrist (for more on this, see the feature on 'Capacity: can the person make the decision?' in this section).

  If the person lacks capacity to make decisions about where they live, the local authority or NHS trust is likely to make the decision. This includes the hospital admitting the person, the local authority funding the person's placement in a care service or a primary care trust funding a nursing home placement.

  In some cases a person with dementia may have given power to someone else to make a decision about where they live. This is called a 'Lasting Power of Attorney' for personal welfare (see the feature on 'Advance care planning' in this section).

  People lacking capacity to make decisions about where they live, who don't have family or friends to represent them, must be supported by an Independent Mental Capacity Advocate(IMCA). This is necessary if the person is due to stay in hospital for more than 28 days or in a care home for more than 8 weeks.

  There are other safeguards in the Mental Capacity Act for people lacking capacity to make decisions about where they live if staying in a hospital or care home will be very restrictive. This may include situations where the stay goes against the wishes of the person themselves or their family, restraint will be used, or they are restricted from going out as much as they would want to. These are called the 'Deprivation of Liberty Safeguards' (see Extra reading below).

• 5. Decisions about money Open

  There are lots of different decisions people make about their money and any property they have. Some decisions are more difficult than others. For example, a decision to sell or buy a house is more difficult than deciding whether to spend money on fresh flowers or toiletries.

  Like any other area of decision making, people with dementia should be supported to make as many decisions as they can make about their money., Best interests decisions must be made when a person has been assessed as lacking capacity to make some financial decisions themselves.

  Legal powers are needed before making best interest decisions about a person with dementia's money or property. There are three possibilities.

  1. Lasting Power of Attorney Adults can give someone else the power to make decisions about their money and property. This is called making a Lasting Power of Attorney (property and affairs). Before the change to the law this was called Enduring Power of Attorney. (For more on this, see the feature on 'Advance care planning' in this section.)

  2. Deputy If someone has lost capacity to make some financial decisions, an application can be made to the Court of Protection to appoint someone to look after their money. They are called a 'property and affairs deputy'. Usually this will be a relative or solicitor.

  3. Appointee The Department of Work and Pensions can appoint someone else to receive a client's benefits and to use that money to pay for expenses such as household bills, food, personal items and residential accommodation charges. An appointee may be a relative or friend. They could also be a representative from the local authority or health trust. Appointees can only make decisions about the money received in benefits.

  If anyone thinks that an attorney or deputy is not acting in the best interests of the person they should report this to the Office of the Public Guardian which oversees these roles.

  Care homes often look after some of the person's money on behalf of attorneys, deputies or appointees to buy toiletries, clothes or food, or to pay for hairdressing or meals out. It is helpful if the person with legal responsibility for the money writes down a guide for the staff about how much can be spent (for example, £30 a week) and what it might be used for.

  Where this happens, care staff will still need to support the person with dementia make their own decisions where possible about how their money is spent. For example, the person may be able to make a choice between having a meal out or buying new clothes.

  Where care staff do not believe the person with dementia can make a decision about how some of this money is spent they will have to spend it in their best interests. As well as getting the person's views where possible, this may involve talking to people who know them, particularly before they lost capacity to make decisions. For example, when deciding what clothes to buy for someone who can no longer make that decision themselves, it would be important to find out what kinds of clothes they have liked or not liked, rather than buy what is convenient for the care staff. Talking to a family member may reveal that a woman would never wear trousers and liked smart clothes. If this was the case buying jogging trousers would not be in her best interests.

• 6. The neglect or ill-treatment of people with dementia Open

  The neglect or ill-treatment of people lacking capacity to make some decisions is now recognised as a crime under the Mental Capacity Act. This applies to all those who work with people who have dementia, including care staff and professionals. The maximum sentence is five years in prison.

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