ACP in dementia

Ideally, advance care planning will occur before or within a few months of dementia diagnosis, when the person is still able to meaningfully participate in the conversation.

The incapacity to make decisions is more certain and progressive in dementia, so advance care planning should cover an extended period of time and explore a wider range of issues. A person's plan should include what they would want at the end-of-life, preferences for health and personal care, and lifestyle issues such as living arrangements and community or religious involvement. Encourage the person and their family to be open to planning ahead, and to be specific when writing an advance care directive so that their preferences are not left up to interpretation.

The Cognitive Decline Partnership Centre in partnership with Dementia Australia (previously Alzheimer's Australia) have developed workbooks and guides for the person and their family to help them start planning ahead.


Related resources

  • Website

    Planning ahead (Start2Talk) for community and health professionals

    Dementia Australia

    Information about advance care planning for people with dementia and memory loss, for staff including doctors, nurses, social workers, chaplains, community care workers, dementia counselling and support workers.
  • Website

    Planning ahead, including advance care planning

    Cognitive Decline Partnership Centre

    For individuals with dementia, or other forms of cognitive decline, advance care planning may need to cover an extended period of time, and a wide variety of issues. Find reports, resources, workbooks, brochures, videos and podcast to support future planning and advance care planning for people with dementia.
  • Website

    Dementia training study centres

    Australian Government of Health

    Resource aims to improve the quality of care and support provided to people living with dementia and their families through providing development opportunities for existing and future dementia care health professionals.
  • Video

    Under-treated pain - Effective pain management for people with dementia

    Decision Assist

    Increase your understanding of prevalence of pain for a person with dementia and barriers for under treatment. Learn strategies and tools to identify and assess pain in people with dementia.
  • Website

    Resources for specific needs: People with dementia

    CareSearch

    Find resources about providing palliative care to people who have dementia on the palliAGED website, gathered and maintained by CareSearch.
  • Fact sheet

    Decision Assist: Why planning ahead can help if memory is becoming more difficult (Chinese - simplified)

    This fact sheet is for individuals affected by dementia.
  • Fact sheet

    Decision Assist: Who will speak for you if you can’t speak for yourself? (Chinese - simplified)

    This fact sheet is for individuals affected by dementia.
  • Fact sheet

    Decision Assist: When you need to make a decision for someone (Chinese - simplified)

    This fact sheet is for individuals supporting someone affected by dementia.
  • Fact sheet

    Decision Assist: Why planning ahead can help if memory is becoming more difficult (Chinese - traditional)

    This fact sheet is for individuals affected by dementia.
  • Fact sheet

    Decision Assist: Who will speak for you if you can’t speak for yourself? (Chinese - traditional)

    This fact sheet is for individuals affected by dementia.
  • Fact sheet

    Decision Assist: When you need to make a decision for someone (Chinese - traditional)

    This fact sheet is for individuals supporting someone affected by dementia.

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