Living with Dementia October 2008

Empowering people with dementia to make decisions for themselves is at the heart of legislation which came into force in England and Wales last year.

In last month's issue, we informed you there would be information on the Mental Capacity Act (MCA) and the Code of Practice in this edition. It is important to be aware of this legislation as it was introduced to empower people who may lack mental capacity to make decisions for themselves wherever possible.

This article is particularly aimed at family carers who are caring for someone with dementia at home. It is intended to help you find ways to enable the person you are caring for to make decisions for themselves.

While what you read below may seem like a lot to consider, it is important to be aware of the Act as not only was it introduced to empower people with dementia (among other people who may lack capacity), but also to protect them from abuse and ensure that those who care for them are acting in their best interests.

The following information is taken from the Code of Practice which supports the Act. The Code provides guidance in understanding how the Act applies in everyday situations (see below). While family or other carers are not legally required to have regard to the Code (unlike health professionals and paid carers), you will still find the guidance useful when supporting a person with dementia make their own decisions.

What does 'lack capacity' actually mean?
It means a person who lacks capacity to make a particular decision or take a particular action for themselves at the time the decision or action needs to be taken.

Who decides whether the person has capacity to make a decision?
If you need to make a decision for someone who may lack capacity you must decide whether that person is able to make the decision on their own. If you decide to make the decision for them, then you must have a 'reasonable belief' that the person lacks capacity to make that decision for themselves.

How do I decide if the person I care for lacks capacity?
An assessment of a person's capacity must be based on their ability to make a specific decision at the time it needs to be made, and not their ability to make decisions in general. You will need to think about these things for both 'big' decisions such as where to live and what treatment to consent to, and for everyday decisions about what to eat or what to wear.

It is important to try to take all possible steps to help people make a decision for themselves. The following questions from the Code of Practice are designed to help you in this process.

• Does the person have a general understanding of what decision needs to be made?
• Do they have a general understanding of the consequences of the decision?
• Can they weigh up this information and use it to make a decision?
• Is there any way you could help them to make the decision for themselves?
• Is there any way you can help them communicate their decision or their wishes and feelings?

If the person cannot do any of the first three things, they can be treated as unable to make the decision. You will then have 'reasonable belief' that the person lacks capacity to make that decision.

How can I help the person I care to make a decision for themselves?
Sometimes people find it difficult to make a decision, but with support, they do have capacity to make it. One of the main principles of the new Act is that everyone should be given all the help and support they need to make a decision before anyone concludes that they cannot make their own decision.
When a decision needs to be made, try:

• asking the person at a different time of the day when their understanding is usually better
• taking more time to explain the information
• explaining or presenting the information in a way that is easier for the person to understand (using simpler language or visual aids)
• finding someone else to help communicate the information.

Significant, one-off decisions such as moving house will require different considerations from day-to-day decisions about a person's care and welfare. However, the same general processes should apply to each decision.

Further help
There will be more information about the MCA next month. In the meantime, a free booklet to assist you in helping people make decisions for themselves has been produced by the Office of the Public Guardian.

For a free copy of Making decisions - a guide for family, friends and other unpaid carers (ref OPG 602), call 0845 330 2900. For more information on the MCA and Code of Practice, visit the OPG website at www.publicguardian.gov.uk