Preparing the later stages
Because dementia is a progressive condition, with the decline in thinking processes usually happening slowly over a number of years, the person with dementia will usually have time to think about and prepare for the later stages of their dementia.
This section outlines what a person with dementia can do in the earlier stages of their dementia when they are still able to make decisions to help ensure they get the care they want in the later stages.
Importantly, this planning needs to be done while you, the person with dementia, are still able to communicate your decisions. Having these conversations can be difficult but it is important, even though it is hard, to persist and make sure everyone knows and understands your wishes and what is important to you.
Advance care planning
An advance care plan (ACP) gives you the opportunity to say (and write down) what’s important to you. It helps people understand what the future might hold and to say what treatment you would and would not want. It helps the person with dementia, their family/whānau and their healthcare teams plan for future and end of life care.
This makes it much easier for the family/whānau and healthcare providers to know what you would want – particularly if you can no longer speak or have difficulty expressing yourself. See the Health Quality & Safety Commission NZ website for more information and resources about advance care planning.
Enduring Power of Attorney
Everybody, even if they are perfectly healthy, should have set up an Enduring Power of Attorney (EPA). EPAs are legal documents in which you nominate a person or people (your ‘attorney/s’) to look after your interests if you become unable to look after them yourself. There are two types of EPA – one for personal care and welfare (such as medical decisions and where you live) and another for managing your finances (bank accounts, assets, property).
The important thing to note is that both EPAs have to be set up while you are still legally capable and able to communicate what you want. Once someone is legally/medically assessed as not being able to make decisions for themselves, an EPA cannot be set up (which is why we should all get an EPA well before we need it).
A financial EPA can be enacted whenever you, the ‘donor’, decide you no longer want to manage your own finances. However, a personal care and welfare EPA can only be enacted after a medical professional has decided you can no longer make good, safe decisions for yourself. If an EPA has not been set up, your family may have to apply to the Family Court for a welfare order to make decisions for you, and that will cost money and time.
Office for Seniors has more information about EPAs and how to get one.
Wills
A Will sets out how you want your estate – your worldly possessions – to be distributed after your death. Like an EPA, a Will is only legally binding if you were capable of understanding its implications when you signed it.
That’s why, just as with an EPA, it’s recommended everybody makes a Will and appoints a trusted Executor. We should also update it whenever we experience a major life event, such as a diagnosis of a terminal condition. We should let our family/whānau and/or friends know where a copy of the Will is kept.
See the Age Concern website for more information about wills.