Planning for End of Life for People with Dementia
04 April, 2011
Planning for the end of life is critical yet often neglected. 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.
Planning early for end of life is essential for people with dementia, yet most do not do it while they can still make their own decisions.
Understanding what care planning options are legally available is vital to ensuring a person’s wishes for their end of life are recorded and respected when the time comes, said Professor Colleen Cartwright, who has written a new report on the topic for Alzheimer’s Australia.
“There are difficult decisions to be made and people need to understand what their legal rights are and to ensure that they will be protected, especially in cases where the person in the end stages of life has dementia,” said Professor Cartwright, who is the Director of the ASLaRC Aged Services Unit in the Health and Wellbeing Research Cluster at Southern Cross University.
“Taking the steps to plan in the early stages of dementia is fundamental and talking to your family, carers, friends and doctors is essential.”
Professor Cartwright is the author of the new publication and seminar series for Alzheimer’s Australia “Planning for the End of Life for People with Dementia: Part One”. It was developed in consultation with members of the Alzheimer’s Australia National Consumer Advisory Committee (NCAC).
The publication discusses issues including palliative care, refusal of treatment, pain control, resuscitation, residential care, advance financial planning and enduring power of attorney.
The publication and seminar series have been developed to provide a guide to people with dementia and their families and carers about the legal options that people have available to them to record their wishes.
“Research has found that very few people want to leave such decisions to their family or doctor, with most preferring to make their own decisions,” Prof Cartwright said.
John Watkins, CEO Alzheimer’s Australia NSW said: “It is hard to prepare for the future and even harder to know how to go about navigating legal, financial and care planning.”
One in two people want to determine the care options that are best suited to them through advance care directives, yet 49% of Australians have not taken any actions to prepare for an event where they may lose the ability to make decisions.
Liz Fenwick, a member of the NCAC said the publication is an essential reference tool for people with dementia and their families and carers.
“It was devastating to find how little I knew about the decisions that had to be taken when the time came in caring for my husband,” Mrs Fenwick said.
“Most people expect people with dementia to die in an aged care home, but this is not always the case and carers and families as well as the person with dementia need the information in the early stages of the disease to prepare.”
Ron Sinclair, another member of NCAC added it was necessary, too, for medical and care staff to act on the wishes of the person with dementia.
“Too often that does not happen,” he said.
Professor Colleen Cartwright is the Director, ASLaRC Aged Care Services Unit at Southern Cross University and is an international expert in ageing, ethics and medical decisions at the end of life.
Download a copy of the full discussion paper Planning for End of Life for People with Dementia Part 1
Download a copy of the media release
Planning for the End of Life Care for People with Dementia Seminars
This seminar is based on Professor Colleen Cartwright’s recently released Planning for the End of Life for People with Dementia Part 1 discussion paper in which she fully explains the different legal options available to people to plan their end of life care. For people with dementia this is particularly important as there will come a time when they will not be able to make care decisions. Advance planning enables them to make their wishes known and appoint someone they trust to ensure their wishes are respected.
This seminar is relevant for people with dementia, family carers and other family members, community care and residential care providers and other health care professionals.
11 April – Sydney
12 April – Hobart
13 April – Melbourne
14 April – Adelaide
15 April – Canberra
18 April – Darwin
19 April – Perth
20 April – Gold Coast
Please contact your local State or Territory Office to register.