Talking about... who will make decisions

Why you might want to talk

It can be hard for anyone to think about a time when they might lose mental capacity and are no longer able to understand and make certain important decisions about their life. Being diagnosed with a condition such as dementia can make this a very real prospect. Talking about who might make decisions on their behalf can be challenging because:

• they are finding it hard to accept an illness or the prospect of poor health in the future
• they may be afraid of what the future holds
• it implies losing some independence
• managing money in particular can be a sensitive subject
• you may be afraid of upsetting them
• family members might be upset at their choices.

There are benefits to discussing it early on and putting arrangements in place. Many people feel relieved once it is done because they know their wishes have been documented, there is clarity for the future and they have taken control.

When to talk

Losing mental capacity isn’t just an issue that affects older people. It can be a sensitive situation to imagine, especially if you and your relative or friend are healthy, but anyone can lose capacity at any time. So we should all be talking about who we would want to make decisions on our behalf if the need arose.

How to start the conversation

You might be nervous about putting your relative or friend on the spot, or unsure of how to begin the discussion. You can introduce the subject in different ways:

• Use triggers for the conversation, such as relevant TV plotlines or news stories
• Use direct experience – talk about yourself and your own arrangements, or something that has happened to somebody you know.

This might be a topic that they've not thought about before. You can encourage them to start thinking about what they would want if the situation arose:

• Ask your relative or friend to consider ‘what if…?’ scenarios
• Ask leading questions – ‘Have you thought about who will make decisions for you if you can’t?’

Look at your options

If your relative or friend wants to give someone authority to make decisions for them should the need arise, there are different options depending on the type of decision. If they want someone to make decisions about their money or care in the future, they will need a lasting power of attorney (LPA). There are two types of LPA:

• property and financial affairs – which can be used by the ‘attorney’ straight away if required and they have permission
• health and welfare – only used when you lose mental capacity

Their attorney will be given complete authority over their property and financial or health and welfare affairs, so you should encourage your relative or friend to think carefully about choosing someone they trust.

If your relative or friend doesn’t set up an LPA and then they lose capacity, you might have to go to the Court of Protection to get permission to act on their behalf. This can be a lengthy and expensive process.

If they want to refuse any specific treatments, they can also make an advance decision to refuse treatment, or an advance statement to say how they would like to be cared for. These will be used if they ever lose capacity to make the decision or communicate their wishes. An advance decision is legally binding.

As a first step, look at:

• power of attorney
• advance decisions and statements.

If your relative or friend is struggling after being diagnosed with a long-term condition, support from a trained counsellor may be helpful, or they could get help from other support organisations.