A written Advance Care Plan helps people to act in accordance with the wishes of your loved one
It also makes it easier you communicate these wishes to doctors and nurses who do not know you.
Research shows that people who have completed some form of advance care planning are more likely to receive end of life care more aligned to their wishes than those who have not, yet 49% of people have not completed any form of advance care planning.
Below are a range of resources that can help you find out more about advance care planning and work together with your loved one to develop their advanced care plan.
Dementia-specific palliative care lecture tour
International dementia expert, Professor Julian Hughes addressed the issue of dementia-specific palliative care during his lecture tour across Australia in 2013.
The lectures, supported by Bupa Health Foundation, saw Professor Hughes launch his paper on the subject of end of life care, Models of Dementia Care: Person-Centred, Palliative and Supportive.
The lectures also saw the launch of Wrestling with Dementia and Death - a paper by Professor Jenny Abbey, supported by Dementia Australia.
Below is a video of Julian's lecture where he discusses the following questions:
- What makes the end of life care different for people with dementia than for people with other chronic diseases?
- What constitutes palliative care for people with dementia?
- What does supportive care add to palliative care when a person has dementia?
- When should discussions take place about end of life with people with dementia?
- How should pain and distress be managed for people with dementia?
- How are ethical issues at the end of life to be dealt with when person has dementia?
Julian C. Hughes is a consultant in old-age psychiatry based at North Tyneside General Hospital. He is honorary professor of philosophy of ageing at the Institute for Ageing and Health, Newcastle University. His most recent book is Thinking Through Dementia, published by Oxford University Press in 2011.
Planning for end of life publication and lecture series
In 2011, Professor Colleen Cartwright developed a publication and a seminar series for Dementia Australia to provide a guide to people with dementia and their families and carers about the legal options that people have available to them to plan their end of life care.
The publications and seminars are now available online and are relevant for people with dementia, family carers and other family members, community care and residential care providers; and other health care professionals.
The papers are available to view in the Dementia Australia library catalogue.
The seminar series can be accessed using the links below:
- Planning for End of Life for People with Dementia - Part 1 (1 of 3)
Video one covers discusses what is meant by advance care planning, fears and concerns in the general community about end of life and looks at advance care planning for people with dementia
- Planning for End of Life for People with Dementia - Part 1 (2 of 3)
Video two covers the benefits of advance care planning, barriers to advance care planning and information for carers of people with dementia.
- Planning for End of Life for People with Dementia - Part 1 (3 of 3)
Video three covers one's capacity to complete an advance care plan, when you should complete an advance care plan, where to keep your advance care plan and who can assist in completing an advance care plan
- Planning for End of Life for People with Dementia - Part 2
Part 2 looks at the issue of euthanasia and explores the arguments on both sides of the debate, including particular issues relevant to people with dementia.
Start to Talk website
The Start to Talk website was developed because many consumers found it difficult to find information about advance care planning that was easily accessible and practical.
The website contains practical advance care planning worksheets that you can print out or complete and save online and information relevant to:
- People who want to prepare for the possible loss of capacity in the future, i.e. preparing for a time when they cannot make their own decisions due to injury or a condition such as dementia
- People with early signs of memory loss or with a diagnosis of dementia
- Family carers of a person with loss of capacity because of an illness such as dementia or some other condition
- Health and community care professionals who want to promote planning ahead with the individuals or communities they work with
Extensive consultations were held with consumers and professionals across Australia and these have formed the basis of this national, consumer-focused website.
The development of the Start to Talk website was funded by the Dementia Australia National Quality Dementia Care Initiative, with support from the J.O. & J.R. Wicking Trust and Bupa Care Services. The need for the website was identified by the Consumer Dementia Research Network within Dementia Australia.
Advance Care Planning Australia website
Developed by Austin Health, the Advance Care Planning Australia website contains lots of information about how to make an advance care plan, including information and documents relevant to your state or territory.
If you have difficulty downloading the documents or if you require multiple copies contact us by email or call the National Dementia Helpline on 1800 100 500.
Please note that the information provided on this page is only a general overview of the options available at end of life.