Making decisions and managing difficult situations

2. Mental Capacity Act

It can be difficult to know whether it is appropriate to make a decision for someone with dementia. The Mental Capacity Act 2005 – and its guidance (the Code of Practice) – explains how to decide if someone is able to make decisions for themselves. It also outlines how to help the person and, if they are not able, how to make decisions for them.

The Act is designed to help professional carers, and family carers are not strictly required to follow it. However, they are encouraged to do so. It provides a useful basis for making decisions and many carers find that it reflects what they would do naturally anyway.

Mental capacity is the ability to make decisions for yourself. It is assumed that every person has capacity unless it is proven otherwise. If you are in doubt as to whether someone can make a particular decision, you will need to assess whether they have this capacity. The Mental Capacity Act and its code of practice provide guidance on this, which is summarised below in Flowchart 1.

If you are making a decision for someone who lacks capacity then you must ensure that it is made in their best interests. To do this, the following questions may be useful:

  • Will the person be able to make the decision at a later time? If yes, can it wait until then? For example, they may be recovering from an operation or from an illness or infection.
  • Are there other ways you can involve them in making decisions, such as giving prompts, showing pictures or offering a choice of responses?
  • What would the person take into account if they were making this decision for themselves? For example, would they prefer a carer of the same gender if they had the choice?
  • Does the person have any particular cultural or religious/spiritual beliefs? Do they have any past or present wishes or feelings that can help guide you in making the decision?
  • Is there anyone else, for example family members or friends, who you can consult with when making the decision?

It is also crucial that the decision you make is the least restrictive option, ie takes into account someone’s rights and freedoms and gives them as much free will and independence as possible. To make sure you are doing this, consider all alternative available options.

Some common areas in which carers may face challenging decisions and choices are outlined below. These include options with different levels of restriction, as well as questions to consider that can help decide a suitable solution. Often a less restrictive option is more effective.

Planning ahead

The Mental Capacity Act provides formal steps that people with dementia can take to have more control over decision-making in the future. One option is to choose someone (or more than one person) they trust to be an attorney, through a legal document called Lasting power of attorney (LPA). Once registered, the attorney(s) have the authority to make decisions on the person’s behalf when they no longer can. The attorney(s) must act in the person’s best interests.

People with dementia can also choose in advance the type of medical treatment they want to refuse in the future by making an advance decision. This is a useful legal document that ensures the person’s wishes can be carried out at a later stage when they lack the capacity to decide.