3. Assessing capacity
It must always be assumed that everyone is able to make a decision for themselves, until it is proven that they cannot. The law says that the only way to establish this is to do a test or assessment to find out whether a person has the ability to make a particular decision at a particular time.
It is important that before testing a person, they are given as much help as possible to make the decision for themselves. You might do this by trying to communicate the information in a different way, or helping them to understand the concepts involved. This could include thinking about the forms of communication you use, breaking information down into small chunks, and thinking of different ways to describe things.
It is also worth remembering that not all decisions have to be taken immediately. Sometimes, it may also be possible to put a decision off until the person has capacity to make it, however this will not be the case for every decision.
Who can assess capacity?
Generally, whoever is there when the decision is being made will assess the person's capacity. However, this will vary depending on the decision that needs to be made:
- For everyday decisions, including what someone will eat or wear, whoever is there at the time can assess capacity, which is likely to be the person's family, carer or care worker.
- For more complex decisions, such as where someone will live, or decisions about treatment, a professional will make the judgment - for example, a social worker or the person's GP. This should be done in consultation with those closest to the person, such as their carer and relatives.
How is capacity assessed?
The decision flowchart below sets out the steps that someone should go through when assessing whether a person has capacity. It's important that families or carers genuinely believe that the person with dementia cannot make a decision before taking action on their behalf.
The test of capacity outlined in this chart can be a very good guide to help people make this judgment.
Generally, families and carers know the person best and so can often tell when the person is and is not able to make a decision. It is likely that they will have to make this judgment more as time goes on. If this is something you find yourself doing, there are ways to make this less daunting. Use the guidance, and use your knowledge of the person. You can seek advice from others, such as the GP, community nurse, or social worker, if you feel you need to.
Sometimes the outcome of a capacity assessment will be challenged. This can happen if someone feels the person had the capacity to make a decision themselves but was not allowed to, or did not have the capacity to make a decision but was allowed to. It may be the person themselves that challenges this, a relative or friend, or even a professional.Sometimes the outcome of a capacity assessment will be challenged. This can happen if someone feels the person had the capacity to make a decision themselves but was not allowed to, or did not have the capacity to make a decision but was allowed to. It may be the person themselves that challenges this, a relative or friend, or even a professional.
If you wish to challenge the outcome of a capacity assessment, it is best to start by speaking to the person that carried out the assessment. Ask them for their reasons and explain why you disagree. If this does not help, you can ask for the decision to be reviewed, either by the person that made the initial assessment, or by the organisation or body involved - for example, social services or a hospital. If you are still dissatisfied, you could put in a formal complaint. For example, if it is a GP or a care home manager that you disagree with, the surgery or care home will have its own complaints procedure that you can follow.
You may want to seek help before challenging a capacity assessment, as there is a risk of damaging a relationship. You may want to talk with a local advice agency, Alzheimer's Society, a carers' service or a solicitor.
If you find yourself challenged over a capacity assessment, stay calm and focused on your reasons. Take your time to explain your reasons for believing that the person could or could not make the decision for themselves. Carers and families are not expected to keep notes of each time they have had to make a judgment about a person's capacity and what their reasons were, especially when making decisions they make every day. Instead, if asked you should be able to outline examples showing why you came to your conclusion. This doesn't happen often, and most families and carers will never be challenged about the assessments they make, but it is something to consider when making these judgments. If it is a major decision that is being considered, you might want to talk to a solicitor - for example, if the person with dementia wants to make or change a will, or dispose of some of their assets.