Future Planning and Advance Care Planning

Why it needs to be different for people with dementia and other forms of cognitive decline

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Advance Care Planning (ACP) has been shown to increase compliance with individuals’ end of life wishes and to reduce stress and anxiety in individuals and carers. However the adoption of ACP is yet to become widespread in the Australia. For ACP to meet the needs of people with dementia, and other forms of cognitive decline, there are some important specific considerations.

If ACP is left until near end-of-life it will be too late for those with dementia to be able to fully participate. The types of decisions that will need to be made as a person’s cognitive function deteriorates are wider than just medical decisions near end of life. As cognitive function decreases family members and carers are called on to make ongoing decisions, and these decisions relate to a range of financial, lifestyle and health issues.

Ideally ACP discussions should commence before an individual is diagnosed with dementia. However, when ACP has not been discussed prior to diagnosis it should occur as soon as possible after diagnosis, usually within a few months. To enable early planning to occur it is important that a timely diagnosis of dementia is provided and individuals and families are supported with information about dementia and the potential prognosis.

This project reviewed current literature and resources, and interviewed more than eighty practitioners representing a variety of sectors across Australia with a view to identifying key issues and successful approaches that might inform the development of a national model.

The project has made 7 key findings to improve the uptake and quality of ACP for individuals with cognitive decline, each supported in the report with a number of specific recommendations and actions for government, organisations and individuals. The full report and companion document is available below.

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Report - Future Planning and Advance Care Planning. Why it needs to be different for people with dementia

Companion document - Future Planning and Advance Care Planning. Why it needs to be different for people with dementia

Social Media Campaign

Unspoken provides a facebook platform for per-conversations to help people begin those hard conversations about advance care planning. Unspoken

MyValues is a Linked in platform to engage in action around planning for the future. MyValues website