Decision-making capacity in dementia
The two-stage mental capacity assessment
Decisions cannot be made for a person with dementia unless there is evidence that they can't make the decision themselves. But how can we assess a person's capacity to make a decision? The Mental Capacity Act sets out two things that have to be checked before it can be decided that a person cannot make a decision for themselves:
Always start from the assumption that the person has the capacity to make the decision in question.First principle of Mental Capacity Act
- The person is unable to make the specific decision under consideration. The person would need to be unable to understand, remember or weigh up relevant information, or unable to. Communicate the decision, whether that is in words or by gesture or facial expression.
- There is some reason why the person's ability to make decisions is affected. If the person has a diagnosis of dementia, this would be true. Other examples are the effects of a stroke, some mental health problems, or having a learning disability. It can also include being under the influence of drugs or alcohol, or shocked after an accident – it needn't be permanent or even medical.
This is called the two-stage mental capacity assessment.
Who decides whether a person can make their own decisions?
The person who is expected to do the mental capacity assessment is the person who might have to do something in the person's best interests (for more on this, see the feature on 'Making decisions in a person's best interests' in this section) if the person lacks capacity. Here are some examples:
- Care workers may need to decide if the person is able to choose whether they have a bath or not, or what food they have.
- A bank clerk may need to decide of someone has the capacity to withdraw a sum of money from their account.
- Family members may need to decide if the person is able to choose to go out with them.
- Doctors or nurses will need to decide if the person can consent to medical treatment.
- A social worker may need to decide if the person can make a decision about staying at home, or moving to a care home.
As you can see, any member of the care team – or the wider community – may have to make an assessment about a person's mental capacity.
What is expected of care workers?
Care workers don't have to be experts in working out whether a person with dementia can make a particular decision. It is OK to have a 'reasonable belief'.
But how do you establish what is a reasonable belief? If you know a person has dementia, you need to think about whether they can understand what the risks are. For example, if the person wants to go out for a walk alone, can they understand the risks of traffic and remember the way home? Or if a person wants to make a cup of tea, are they able to understand the risk from boiling water?
If the decision is minor – say, deciding between tea and coffee or what music to listen to – then most people will be able to make their own decision. If you think a person with dementia is unable to make a particular decision, you should be able to give reasons for this. It is good practice to write these in their care plan. Here are some examples to show what this would look like:
Mrs Singh is unable to make decisions about having a wash. This is because her dementia means she doesn't understand the risks of not washing when doubly incontinent.
Mr Charles has dementia and diabetes. He is unable to make decisions about what he eats. This is because he does not understand the risks of poor sugar control.
But it is important to remember that people can make unwise decisions – even in relation to their own – if they understand the consequences.
A capacity dilemma: helping with medication
Often care workers are expected to help people with dementia to take their medication. As a care worker, you need to know if the person is making their own decisions about agreeing to take the medication or if it is being given to them in their 'best interests' (for more on this, see the feature 'Making decisions in a person's best interests' in this section).
The doctor prescribing the medication should have decided this already and let the staff supporting the person know. This should be written in the care plan.
The care staff wouldn't need to do a capacity assessment each time they supported the person, but should be alert for any evidence that the person might have improved their ability to consent to taking the medication. If this happens, make sure the doctor knows that you think the person's capacity has improved.
Where the person lacks capacity, it would be OK to encourage the person to take their medication if they are gently resisting it. But it wouldn't be good practice to ignore any evident distress about taking the medication, or for the staff member to hide the medication in food or to use a form of restraint so the person takes the medication. This can only happen if it is written in the care plan and agreed by a proper best interests process as being in the person's best interests.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Capacity to make decisions
- What the research says: Making decisions
Further reading Open
Department for Constitutional Affairs (2007) The Mental Capacity Act 2005 Code of Practice, London: The Stationery Office.
SCIE's Mental Capacity Act (MCA) resource. This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
SCIE (2009) At a glance 5: Mental Capacity Act, London: SCIE.
Useful links Open
Dementia: Making decisions
This 2012 guide from Alzheimer Scotland offers practical advice and information on decision-making for people appointed to make decisions on behalf of someone with dementia either as an attorney or guardian (in Scotland) or deputy (in England and Wales).
Making decisions: a guide for people who work in health and social care
This 60-page guide prepared by the Mental Capacity Implementation Programme in 2009 gives a broad overview of the Mental Capacity Act and is aimed at professionals who are supporting people who are unable to make some decisions for themselves.
Nothing ventured, nothing gained: risk guidance for people with dementia
This 2010 Department of Health guidance presents a risk enablement framework for assessing, enabling and managing risk collaboratively with people with dementia and their carers.
SCIE Mental Capacity Act resource
This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
Related pages from this section Open