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Home Care Clinical Care Assess Your Knowledge Organisational SupportResidential Aged Care Assess Your Knowledge Clinical Care Organisational SupportEnd of Life Law Toolkit Capacity and Consent to Medical Treatment Factsheet: Advance Care Directives Futile or Non-Beneficial Treatment Legal Protection for Administering Pain and Symptom Relief Managing Disputes about Medical Treatment Decision-Making Substitute Decision-Making Urgent Medical Treatment Voluntary Assisted Dying Withholding and Withdrawing Life-Sustaining Medical Treatment Overview of End of Life Law in Australia Advance Care DirectivesDementia Clinical Care
- Advance Care Planning
- Recognise End of Life
- Assess Palliative Care Needs
- Provide Palliative Care
- Work Together
- Respond to Deterioration
- Manage Dying
- Bereavement
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Advance Care Planning (ACP) is a process focused on what matters to the person with dementia. It is not a quick task but aims to help the person and their family understand and express their preferences, choices, and values for future health and personal care. These can change over time. Through helping the person reflect, the goal is to empower them to discuss their wishes. [1]
Each type of dementia impacts the person differently. However, the loss of communication in the later stages of disease generally makes early and regularly reviewed advance care planning conversations important. [2]
An Advance Care Directive is a legal document that a person with decision-making capacity makes about future health care. Depending on the State or Territory, it can be used to:
- make specific decisions about medical treatment, such as refusing life-sustaining treatment
- express preferences and values about medical treatment and care
- appoint a substitute decision-maker. [3]
An Advance Care Directive can only be followed when the person no longer has capacity for the decision. However, in the Australian Capital Territory a person can also choose for their Directive to apply when they still have capacity. The ELDAC End of Life Law Toolkit has a factsheet that covers Advance Care Directives in more detail.
A diagnosis of dementia does not automatically remove a person’s capacity to participate in Advance Care Planning or give consent to treatment. Decision-making capacity is situation specific, meaning it applies to that one decision, not every decision going forward. [4] The capacity of a person with dementia may fluctuate over time. Consent must be obtained before a person receives medical treatment or undergoes a medical examination. A person may consent to or refuse medical treatment if they have decision-making capacity.
“All adults are presumed to have capacity to consent to or refuse treatment, unless it can be shown that they do not. A person will have capacity for a medical treatment decision if they can:
- comprehend and retain the information needed to make the decision, including the consequences of the decision; and
- use and weigh that information as part of their decision-making process.” [5]
For more information:
- The ELDAC End of Life Law Toolkit provides an overview of Capacity and Consent to Medical Treatment. There is also a guide for aged care providers (pdf) on this topic.
- The End of Life Law in Australia (QUT) website discusses the requirements in each State or Territory for a person to have decision-making capacity.
Supported decision-making is where a person, such as a person with cognitive impairment, is provided with support to participate in decision-making, and to make their own decisions. [5] This is different to substitute decision-making, where others decide for them. [6] As outlined in this guide on supporting decision-making (pdf) for people living with dementia, family members and carers, the person may make choices across various aspects of their life including:
- everyday activities
- health care
- lifestyle
- financial. [6]
Examples of supported decision-making include:
- providing information in a format the person can understand
- giving the person more time to process and discuss the information with others
- talking through options with them; or
- communicating decisions made by the person to health professionals. [5]
The Cognitive Decline Partnership Centre (CDPC) has help sheets that provide an introduction to supported decision-making in other languages.
The ELDAC End of Life Law Toolkit has factsheets on:
For further information about the law on supported decision-making see End of Life Law in Australia (QUT) supported decision-making section.
A substitute decision-maker is a person with legal authority to make a decision on behalf of a person who does not have capacity to decide. If the person or a Tribunal has not appointed a substitute decision-maker, the law in each State and Territory sets out who can decide. This is usually a person’s spouse, other family members or close friends. So long as they have a close and continuing relationship with the person. [7]
A person’s substitute decision-maker or family member cannot make an Advance Care Directive for the person. Only the person can make a Directive, when they have capacity.
However, if the person no longer has capacity, a substitute decision-maker can engage in treatment and care discussions on the person’s behalf.
For information about how to identify a person’s lawful substitute decision-maker see:
- the ELDAC End of Life Law Toolkit factsheet Substitute decision-making
- End of Life Law in Australia (QUT) Treatment decisions pages.
Visit the ELDAC End of Life Law Toolkit for other legal topics relevant to people living with dementia, including Advance Care Directives withholding and withdrawing life-sustaining treatment, futile or non-beneficial treatment, urgent medical treatment, pain relief, complaints and dispute resolution, and voluntary assisted dying.
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How to approach ACP when caring for people with dementia
- As dementia can lead to a loss of capacity or fluctuating capacity, advance care planning should occur as early as possible after a dementia diagnosis.
- Having dementia does not automatically mean the person lacks capacity to make their own decisions or do advance care planning. A person with dementia can make decisions so long as they have capacity when a decision is needed.
- Supported decision-making can enable a person with dementia to participate in advance care planning and make their own decisions.
- A substitute decision-maker can make medical treatment decisions when the person loses capacity.
- While a person with dementia has capacity, they can choose to appoint someone they trust. This could be a family member or friend as their substitute decision-maker.
- If there is no substitute decision-maker appointed, each State and Territory has legislation that sets out who will be the decision-maker.
- The ELDAC End of Life Law Toolkit has a factsheet that provides information on substitute decision-making.
- Advance Care Planning Australia (ACPA) provides more information on being a substitute decision-maker.
- Check if the person with dementia has a current Advance Care Directive or another legal document for health care decision-making. This could be an Enduring Power of Attorney or Enduring Guardian document.
- Provide the person with dementia and their family and carer/s with relevant information on advance care planning. Information on Advance Care Planning should be meaningful and understandable. Consider resources in Culturally and Diverse Languages (ACPA).
- Book a suitable date and time in a quiet, undisturbed setting to undertake the Advance Care Planning conversation.
- Consider supports that may help a person with dementia to be comfortable during the conversation. Such as is the person better able to have discussions at certain times of the day? Is there someone they trust who they would like to be present during the discussion? Consider allowing extra time for the conversation, so that the person is not hurried, can process information, and ask questions.
- If a person is reluctant to discuss Advance Care Planning, start by asking about what is important to them. Or explore their thoughts on someone they know who experienced ill health. Draw on the ACPA suggestions about starting the conversation.
- Utilise the What Matters Most Discussion Starter from Palliative Care Australia (PCA) to help facilitate the conversation. The Discussion Starter and card pack has been developed for older people using aged care services and those living with dementia.
- Draw on and share information on Planning Ahead from Dementia Australia to assist people to plan for when they may no longer be able to make decisions on their own. Planning ahead can include:
- Communicating decisions related to finances, lifestyle, or healthcare and to put those decisions into action.
- Involve other team members as appropriate including: Clinicians, social workers, aged care workers, chaplains, and cultural/spiritual representatives.
- Be informed and aware of the systems and processes within your organisation or service for documentation, communication and secure storage. It is critical that there is appropriate transfer of the Advance Care Directive for the person with dementia, such as if they are admitted to hospital. This ensures their preferences and values are known and acted upon.
- Make sure that a copy of the person’s Advance Care Directive is easily identifiable in the person’s records and informs their goals of care. Where appropriate, encourage uploading to My Health Record.
- A person will not be able to access Voluntary Assisted Dying (VAD) for dementia. However, a person who is in the early stages of dementia and has a terminal illness, such as cancer, may be eligible for VAD if they have decision-making capacity and meet the other eligibility criteria. [8]
- The ELDAC End of Life Law Toolkit has a factsheet on frequently asked questions about voluntary assisted dying.
- Dementia Australia has a Policy Position Statement (127kb pdf) on dementia and access to Voluntary Assisted Dying.
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How to build knowledge, confidence and skills in ACP when caring for people with dementia
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- Refer to the End of Life Law Toolkit for more practical information, including how the law applies when caring for people with dementia.
- See Nina’s story, which provides a Case Study about a person’s capacity to make medical treatment decisions and provide valid consent. It is a valuable learning resource and reflection tool.
- Watch the ELDAC and ELLC video on ‘Seven common questions about Advance Care Directives in aged care’. Advance Care Directives and decision-making capacity are discussed.
- Gain a better understanding about Supported Decision-Making by listening to the ELDAC podcast on this topic.
- See the ELDAC Case Study on John as an example of how to undertake an advance care planning conversation with a person with dementia and their family members.
- Increase your knowledge by completing the free End of Life Law for Clinicians (ELLC) aged care training course. The modules explain the legal aspects of end-of-life care, including for people living with dementia. This summary (pdf) provides information about the modules covered and how to register.
- Learn more about advance care planning for people who can’t make their own decisions from Advance Care Planning Australia (ACPA).
- Increase your understanding of dementia by reviewing The Advance Project® dementia-focused resources offered across a range of learning options and care settings. Content includes guides for people who can undertake their own advance care planning and those who require supported decision-making or substituted decision-making.
- Improve your skills and confidence through reflection on practice, by:
- Talking with peers (educator, manager, colleagues) about advance care planning conversations. What is the most challenging part in starting, facilitating, and documenting conversations, and how can you address those challenges. Fears surrounding upsetting the person or your own lack of knowledge are two common barriers.
- Inviting peers to join your first Advance Care Planning conversation with a person who has dementia.
- Consider the Dementia Language Guidelines from Dementia Australia for using appropriate, inclusive and non-stigmatising language when talking or writing about a person with dementia. Reflect on how this might inform your approach to advance care planning.
- The ELDAC Our Diversity webpage has information and resources on supporting advance care planning for diverse groups.
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Information for families and carers
Dementia Australia
This resource provides useful information on advance care planning and communicating with the person with dementia to ensure their preferences and values are respected.
Dementia Australia
The helpline (Ph: 1800 100 500) is free and available 24 hours every day. It offers:
- confidential support and guidance
- navigation of services and programs
- information and advice
- lists other ways to contact Dementia Australia.
Being a substitute decision-maker
Advance Care Planning Australia
This webpage provides support and information on how to become a substitute decision-maker and what to consider when making decisions on behalf of another person.
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References
- Australian Government Department of Health and Nous Group Pty Ltd. National framework for advance care planning documents. Canberra (AU): Australian Government Department of Health, May 2021 [cited 4 Nov 2025].
- Advance Care Planning Australia (ACPA). What is Advance Care Planning?. July 2025. [cited 14 Dec 2025].
- ELDAC End of Life Law Toolkit. Factsheet: Advance Care Directives. 17 April 2025. [cited 4 Nov 2025].
- Queensland University of Technology (QUT) End of Life Law in Australia. Capacity and Consent to Medical Treatment. 11 March 2025. [cited 4 Nov 2025].
- ELDAC End of Life Law Toolkit. Overview: Capacity and Consent to Medical Treatment. 18 October 2024. [cited 5 Nov 2025].
- Sinclair C, Field S, Williams K, Blake M, Bucks R, Auret K, Clayton J, Kurrle S. Supporting decision-making: A guide for people living with dementia, family members and carers. (2MB pdf) Sydney (AU): Cognitive Decline Partnership Centre; 2018. [cited 5 Nov 2025].
- ELDAC End of Life Law Toolkit. Factsheet: Substitute Decision-Making 21 August 2024. [cited 3 April 2025].
- ELDAC End of Life Law Toolkit. Frequently asked questions about voluntary assisted dying. 28 August 2024. [cited 5 Nov 2025].
Page updated 23 September 2026
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