Advance care planning and dementia

Advance care planning (ACP) is the process of deciding and documenting your wishes for future health care. It’s not about giving up control, it’s about claiming it early, clearly and with confidence.

Dementia is a progressive condition, which means your memory, thinking and ability to make decisions will be more affected as time passes. In time, you might no longer be able to make or communicate your own choices about your health care.

Things to know about dementia and your decision-making capacity:

• Being diagnosed with dementia doesn’t mean you automatically lose your capacity to make decisions for yourself.
• Your decision-making capacity will change over time. It might happen more quickly or slowly than it does for other people and could vary by the kind of decision you need to make.
• You should be supported to participate in decisions about your care as much as possible.
• If your speech is affected, non-verbal actions you make may still indicate your preferences.
• As your dementia progresses, complex health and personal decisions often will start to involve family, carers (paid and unpaid), and substitute decision-makers.
• Substitute decision-makers and health professionals must consider the values and wishes you record.

Advance care planning isn’t just about end-of-life care. It applies to any situation where you’re unable to communicate your preferences. That might be towards the end of your life, but it could also apply temporarily in other health situations.

The other thing ACP does is take pressure and stress away from your family and other people who care for you. If you have a clear, documented plan, they won’t have to make big decisions later on without knowing if it’s what you want.

So, ACP can:

• keep you in charge of your health decisions, even if you’re not able to choose in the moment
• make sure you get the care you want, and don’t get any form of care you don’t want
• reduce stress, uncertainty and conflict for families and carers
• help healthcare professionals understand, respect and follow your wishes.

Starting the conversation: your values

Start planning ahead as soon as possible after your diagnosis, while your capacities are at their strongest. You can make plans now so that later, your decisions will be respected and followed, and you’ll get the care you want.

If you’ve been diagnosed with dementia, thinking about planning for your future needs can be intimidating, even scary. That’s normal. If you don’t want to start with specific details of future care, you could start more generally.

When you’ve made life decisions in the past, what influenced your choices? What values, parts of your life and identity help you decide?

That will be different for everyone, but examples could include:

• cultural traditions and family connections
• faith and spiritual beliefs
• independence, productivity and caregiving roles
• work history and life achievements
• connection to country and nature
• music, theatre and daily routines.

Specifics: quality of life and care preferences

With that in mind, you can start thinking about your future care, with questions like:

• What does quality of life mean to you?
• What types of medical care would you want, or not want?
• Where would you prefer to receive care?

Now you’re ready to start thinking about specific situations and kinds of care, and what you do and don’t want. You can think of them as acceptable and unacceptable health outcomes.

Everyone will have their own preferences, but acceptable health outcomes might include:

• receiving care that maintains your comfort and dignity
• If you need to live in supported care, staying within your usual community and still seeing your family and friends.

Unacceptable health outcomes could include:

• being connected to tubes in ICU
• being at home in pain
• hospital treatment with little chance of recovery.

For each of these unacceptable outcomes, you can decide what action should be taken if you’re not able to make a decision for yourself.

All these conversations, though they might be difficult, are empowering you to stay in control of your future care. Once you’ve got this far, you’re ready to document your wishes.

Before you do, though, a quick note: whatever you’ve decided, whatever preferences you express, you can always change your mind. Advance care planning decisions can be reviewed and updated while you have the capacity.

Documenting your care wishes

Advance Care Directives

In Australia, advanced care planning may lead to you completing an Advance Care Directive (ACD): a legal document that records your future health care wishes and treatment preferences.

Things to know about Advance Care Directives:

• To be legally binding, an ACD must usually be completed while you still have decision-making capacity.
• Refusals of treatment are particularly important and often legally binding.
• Values and preferences sections must still be considered, even if not legally binding.
• If you don’t have an ACD, future decisions about your care may fall to a substitute decision-maker under state law.

The way you make an Advance Care Directive varies depending on which state or territory you live in. To find out how it works where you live, visit Advance Care Planning Australia: Record your choices and select your state or territory.

Limitations of an Advanced Care Directive

An Advance Care Directive in Australia can’t include:

• requests for medical care that does not work or has no clinical benefit
• a request for voluntary assisted dying (VAD), which requires ongoing personal capacity
• requests for illegal actions or active steps to unnaturally end life
• unclear or overly broad statements that make it hard for doctors to know what you want.

In addition to this:

• Doctors can override a refusal of treatment to save a life if they suspect self-harm or suicide attempts.
• If nobody can find the physical or digital document during an emergency, doctors cannot follow it.
• An ACD created in one state or territory is not always automatically or fully transferrable across borders because local definitions of capacity and medical treatments differ.
• If your health situation changes in a way you did not expect, your instructions may not apply or get set aside.
• Your ACD only works when you lose the ability to make your own choices. Choices you make while you are still able to decide for yourself override the ACD. 

Deciding who can speak for you

Part of advance care planning is choosing someone you trust to make decisions on your behalf if you can no longer do so. This person may be formally appointed through a legal process. The title of this varies by state or territory, but could include:

• Enduring Guardian
• Enduring Power of Attorney
• Medical Treatment Decision-Maker
• Person Responsible

In each case, the role is the same. They’re a person you have given legal authority to make decisions for you if you can’t.

Before appointing someone:

• talk with them about your values and wishes
• make sure they understand what matters most to you
• make sure they are willing and capable of making decisions for you
• give them copies of your ACD and any other relevant documents.

You can give more than one person this authority if you want.

If you don’t appoint a substitute decision-maker, state or territory laws will decide who can act for you, and that person may not know or be able to act on your wishes.

Sharing and storing advance care planning documents

Once you have the documents you need to ensure your future care will follow your wishes, keep them secure. Make sure you always know where your documents are and that you can get them quickly if you need them.

Share your advance care planning documents with people who will use them if they’re needed. This could include:

• your substitute decision-maker(s)
• family, friends and carers
• your GP, specialists and hospital teams.

You can also upload documents to the Australian government’s My Health Record website so they are accessible in emergencies.

For more information, visit Advance Care Planning Australia: Storing your records.

Advance care planning as dementia progresses

Dementia is usually described as having three stages: early-stage, middle-stage and late stage. They’re different for everyone, but broadly, they describe how dementia might affect you as it progresses. You can find out more about the stages and progression of dementia on our page About dementia.

Most people are diagnosed with dementia in the early or middle stages of the condition.

In the early stages of dementia, your decision-making capacity will be at its strongest. This is why it’s best to start planning as soon as possible after your diagnosis. You can work on your values and preferences, talk to your family, friends, carers and medical team, choose your substitute decision-makers and record your choices in an Advance Care Directive.

In the middle stages of dementia, you may be more affected by your symptoms. While you have capacity, you can review your documents, the choices you made and the people you chose and make changes if you want to.

Depending how dementia progresses for you, you may need to put your advance care plan into action at this stage, or in the later stages. This might be temporary or permanent.

In the late stages of dementia, you are likely to need support with decision making. All your planning will now ensure that, if you are unable to decide for yourself, the people around you have clear guidance to follow to ensure you get the care you want, following your values and wishes.

More support for advanced care planning

For more information, advice and support on advance care planning for dementia, try the following:

• Your doctor: the best starting point for discussing your medical preferences.
• The National Dementia Helpline: available any time of the day or night for further information or to arrange a personalised discussion: 1800 100 500.
• Advance Care Planning Australia: Provides resources, online guides, and a national support service (1300 208 582, 9am-5pm AEST).
• Palliative Care Australia
• National Legal Aid: offers free legal advice on creating Advance Care Directives and appointing substitute decision-makers
• Public Advocate/Guardian: offer forms and legal information. Search for ‘Public Advocate’ and your state or territory.
• Royal Association of Justices: Can assist in finding a Justice of the Peace (JP) to witness documents. Search for ‘Royal Association of Justices’ and your state or territory.

Advance care planning for Aboriginal and Torres Strait Islander people

• Palliative Care Australia: Aboriginal and Torres Strait Islander peoples palliative care resources
• Australia Indigenous Health Infonet
• CareSearch - Aboriginal and Torres Strait Islander Care
• Final Footprints: My Culture, My Kinship, My Country

Advance care planning in other languages

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