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New dementia resource launched

Publication and seminars to provide information on end of life decision making for people living with dementia and their families.

A new publication and supporting seminar series have been developed to provide a guide for people with dementia and their families and carers about the legal options for recording wishes for end of life care.

The author of the publication has also written a new report which showed planning early for end of life and the pain relief available is essential for people with dementia, yet most do not do it while they can still make their own decisions.

Understanding what care and pain relief 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, author of the report and supporting publication.

"There are difficult decisions to be made and people need to understand what their legal rights are to ensure that they will be protected, especially in cases where the person in the end stages of life has dementia," said Cartwright, director of the Aged Services Learning and Research Centre at Southern Cross University.

"Planning to manage pain is often confused with euthanasia and taking the steps to plan in the early stages of dementia is fundamental. Talking to your family, carers, friends and doctors about this is essential to avoid confusion.

"Families and carers need to be aware of your plan and more importantly to be prepared to advocate and agitate for your rights to be honoured."

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.

"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," Cartwright said.

One in two people want to determine the care options that are best suited to them through advance care directives, yet 49 per cent of Australians have not taken any actions to prepare for an event where they may lose the ability to make decisions.

Liz Fenwick, a Victorian 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," 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."

For details on the series of national seminars taking place go to www.alzheimers.org.au

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