Advance Care Planning - Dementia

Advance Care Planning

What is Advance Care Planning?

Advance care planning is a process of planning for future health and personal care whereby a person’s values, beliefs and preferences are identified so they can guide decision-making at a future time when the person is unable to communicate their decisions. 5

An advance care planning discussion will often result in an advance care plan. Advance care plans state preferences about health and personal care and preferred health outcomes. Decisions may be made on the person’s behalf, but a person’s wishes should be used to guide the decisions.

Advance Care Planning - ELDAC Care Model

What is an Advance Care Directive?

Advance Care Directives are one way of formally recording an advance care plan. An Advance Care Directive is a type of written advance care plan recognised by common law or authorised by legislation that is completed and signed by a competent adult.

The ELDAC End of Life Law Toolkit has a section on Advance Care Directives, the different types, details of when a person can make an Advance Care Directive, and when they must be followed.

An Advance Care Directive can record the person’s preferences for future care and appoint a Substitute Decision Maker. A Substitute Decision Maker is someone identified by law to make substitute decisions on behalf of someone who does not have capacity to make decisions. There can be more than one Substitute Decision Maker appointed.

The ELDAC End of Life Law Toolkit has a section on Substitute Decision-Making, which includes information on the role of the substitute decision-maker, how these are appointed, and what decisions a substitute decision-maker can make.

Supported decision-making is the process of enabling a person who requires decision-making support to make, and/or communicate, decisions about their own life. It is different from substitute decision-making when someone else makes decisions. The Cognitive Decline Partnership Centre has extensive resources for health professionals and people with dementia and their families.

Advance Care Planning Resources

Advance Care Planning Australia (ACPA)

Advance care planning is important for everyone, especially for people with dementia where planning ahead gives them opportunity to say what they want for the future if they no longer have the capacity to do so. Advance care planning and advance care directives are governed by state and territory legislation. Forms and requirements for writing advance care plans and appointing substitute decision-makers vary between and states and territories. Advance Care Planning Australia provides information specific to each of the Australian states and territories.

ELDAC Toolkit Educational Videos

Watch the videos on Recognise End of Life for Residential Aged Care and Home Care, which also discusses advance care planning.

Capacity and Consent to Medical Treatment

All adults are presumed to have capacity to consent to or refuse treatment, unless it can be shown that they do not. The ELDAC End of Life Law Toolkit has a section on Capacity and Consent to Medical Treatment, which includes specific information about consent to medical treatment and discusses a person’s capacity to make decisions about medical treatment.

Decisions to withhold and withdraw life-sustaining medical treatment are common in palliative and end of life care. The ELDAC End of Life Law Toolkit has a section on Withholding and Withdrawing Life-Sustaining Medical Treatment, which explains what is life-sustaining treatment, when can this be withheld or withdrawn, and who can make that decision. Further information is also available about Futile or Non-Beneficial Treatment.

People Living with Dementia and Advance Care Planning

The Cognitive Decline Partnership Centre at University of Sydney developed a quick guide (426kb pdf) based on the Start2Talk website to assist all adults to plan ahead. The Centre also offers a comprehensive list of resources on advance care planning for people with dementia and their families, including decision making brochures, which are also available in community languages.

The Advance Project® provides resources to support advance care planning and palliative care for people living with dementia. This includes guides for people who are able to undertake their own advance care planning, as well as those who require supported decision-making or substituted decision-making.

  • Family Resources
Advance Care Planning Australia (ACPA)

ACPA has comprehensive resources on understanding advance care planning for individuals and family, friends and carers, including these key resources:

Dementia Australia developed Start2Talk, which is a comprehensive resource to assist Australians in starting conversations about planning ahead for the future in case a person has a sudden accident, becomes very ill, or develops a condition such as dementia that affects memory and planning ability. Planning ahead can include issues related to finances, lifestyle or health care. Start2Talk gives information needed to make decisions and put them into action.
Palliative Care Australia
The What Matters Most for Older Australians Discussion Starter and card pack has been developed for older people using aged care services and those living with dementia. These free resources, can be ordered online, and are available in the following languages: Arabic, Croatian, Greek, Hindi, Italian, Maltese, Polish, Simplified Chinese, Spanish, Ukrainian, and Vietnamese.
Dementia Australia
Dementia Australia has produced a guide (1.7MB pdf) for people living with dementia who identify as LGBTI and their loved ones.

Page last updated 08 December 2023