Advance care planning (ACP) is an ongoing process by which goals of care and the suitability of specific treatments are decided based on the person with dementia’s values and preferences. Ideally, the process should have begun when the person was able to express these wishes for themselves. But it can still take place with input from the family after the person can no longer be involved him/herself.

ACP requires decision makers to reflect on the progressive nature of dementia and allows decisions to be made when the family are emotionally ‘safe’ rather than in a medical crisis. Plans should be reviewed and updated on an ongoing basis as the person’s condition changes. This progressive approach may also assist families in coming to terms with their loved one’s declining health and the need for a palliative approach.

Discussion of goals of care is more important than completion of an advance care directive (ACD), ‘Refusal of Treatment Certificate’ (RTC) or ‘Do Not Resuscitate’ (DNR) order. This is because the aim of ACP is to prepare surrogate decision makers to make decisions on a broad range of healthcare issues, including those that no-one would have thought of ahead of time.

Where a person with dementia is no longer able to contribute to the conversation, it is important to ensure that discussion with families focuses on what the person’s wishes regarding their care would have been rather than what the families’ wishes are based on their own emotional needs.

Resources to assist in the development of advance care planning documents and guiding conversations specifically for dementia can be found on the Dementia Australia website.

Last updated 25 September 2015