What’s at stake?

It can be hard for anyone to think about a time when they might lose mental capacity. Being diagnosed with a condition such as dementia can make this a very real prospect. Talking about who will make decisions on their behalf can be difficult 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
  • you may be afraid of upsetting them
  • it means losing independence and control
  • managing money can be a sensitive subject
  • family members might be upset at their choices.

There are positive benefits of putting arrangements in place and 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. 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.

My mum's already told me, she's told all of us, 'if I'm ill.. do not resuscitate. I'm adamant on that.' She brought it up so we wouldn't go against it. She's done it legally. She had to get it signed and everything. I mean, it's difficult for us to hear, very difficult, but you've got to respect their wishes.

How to start the conversation

  • Use triggers for the conversation, such as TV plotlines or news stories
  • Use direct experience - talk about yourself and your own arrangements, or something that has happened to somebody you know
  • Ask your relative to consider ‘what if…?’ scenarios
  • Ask leading questions – ‘Have you thought about who will make decisions for you if you can’t?’

What are your options?

If your relative wants to give someone authority to make decisions for them, there are different options.  If they want someone to make decisions about their money or care in the future, they will need a lasting power of attorney. There are two types:

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

If your relative doesn’t set up a Lasting Power of Attorney 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 set out their wishes for their wellbeing and health care, they can also make an advance decision to refuse treatment, or an advance statement to say how they would like to be looked after and cared for. These will be used if they ever lose capacity to make or communicate their wishes. An advance decision is legally binding.

As a first step, look at:

If your relative 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.

Next steps

To find out more about Power of Attorney contact the Office of the Public Guardian gov.uk/government/organisations/office-of-the-public-guardian

You can create an advanced decision or advance statement with the help of the online tool mydecisions.org.uk


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