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 has released a series of videos as part of a campaign focusing on advance care planning and dementia. The videos share the viewpoints and experiences of health care practitioners and those living with dementia.
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’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.’
Start having advance care plan conversations early
Advance care planning for people with dementia takes time and needs sensitivity, says Sarah Togher, an educator and advisor with Dementia Wellington.
Sarah says it’s important for people with dementia to start having 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.
‘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.
‘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,’ Sarah says.
Tools and resources
For more information, you can watch the videos featuring Colin, Terry and Sarah.
You can find information and other helpful tools on the advance care planning section of our website.