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Who Would You Like To Speak For You If You Can’t?

If you have dementia, having an advance care plan means people will know your wishes, even if you can no longer tell them.

An advance care plan is a way for people to think about, talk about and share what matters to them now in case they are unable to say it later.

The Health Quality & Safety Commission is launching a campaign today focusing on advance care planning and dementia, including a series of videos, which are available on its website.

Sarah Togher - Dementia Wellington

Advance care planning for people with dementia takes time and needs sensitivity, says Sarah Togher, an educator and advisor with Dementia Wellington.

‘Talk to your whānau and others close to you about things like where you would want to be cared for, who you would like with you towards the end, who you would like to speak for you if you can’t, and your worries or concerns about being ill or dying.’

Sarah says it’s important for people with dementia to start having their advance care planning conversations early, when they have the ability to understand what they’re documenting.

‘However, it’s also important to be sensitive to where a person is in their dementia journey.

‘Talking about advance care planning can be overwhelming if someone has just been given a dementia diagnosis. It’s an emotional time. I’ve found some people are keen to make a start, while others aren’t ready to think too far ahead.’

She says advance care planning for people with dementia often ties in with them ‘getting their affairs in order’ and perhaps appointing an enduring power of attorney.

‘Take time with it. Talk about how you’re feeling and share that with your loved ones. It can be simple, such as wanting to make sure your feet are never cold. It may be about how it would be nice to overlook a river if you are in residential care.’

It’s important for someone with dementia to review their advance care plan often to make sure it still reflects their wishes.

‘When someone with dementia no longer has the capacity to make decisions, an advance care plan eases that very emotional time for those making decisions on their behalf, knowing they’ve had the conversation,’ says Sarah.

Terry and Colin

Terry Webb recently helped his brother Colin complete his advance care plan.

Colin has dementia and began his advance care plan when he and Terry attended a ‘Living well with dementia’ course run by Dementia Wellington.

Colin later completed a draft of his plan and then he and Terry went through it together, removing any ambiguities.

Colin’s plan details what matters to him, what he would do if his time were limited, how much he wants to know about his treatment, how much he wants his loved ones to know about his health, and whether he wants to be kept alive on life support.

Terry says Colin having an advance care plan is very helpful for the family. ‘We’re not worried about what to do because Colin’s intent is very clear.’

Sarah, Colin and Terry feature in new videos discussing advance care planning for people with dementia. These, and other helpful tools and information about advance care planning, are available on the Health Quality & Safety Commission website:

Advance care planning and dementia videos (hqsc.govt.nz)

ACP information for consumers (hqsc.govt.nz)

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