Be prepared!

A new report from Alzheimer’s Australia urges education and action on planning for end of life with dementia

Above: Professor Colleen Cartwright.

A new a new report written for Alzheimer’s Australia highlights the importance of planning for the end as soon as a diagnosis of dementia is made, and it’s author is on tour explaining its contents in seminars around Australia.

End of Life for People with Dementia: Part One was developed in consultation with members of the Alzheimer’s Australia National Consumer Advisory Committee (NCAC) and the author, Professor Colleen Cartwright, is just finishing up a whirlwind tour of the country with a seminar today in Perth, followed by the final one tomorrow on the Gold Coast.

The publication discusses issues including palliative care, refusal of treatment, pain control, resuscitation, residential care, advance financial planning and enduring power of attorney.

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, according to Professor Cartwright, Director of the ASLaRC Aged Services Unit at Southern Cross University

“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,” she said.

“Taking the steps to plan in the early stages of dementia is fundamental and talking to your family, carers, friends and doctors is essential.” 

“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.” 

The publication and seminar series have been developed to provide a guide for people with dementia, their families and carers, about the legal options that people have available to them to record their wishes.  

John Watkins, CEO of Alzheimer’s Australia NSW, said it was hard to prepare for the future and “even harder to know how to go about navigating legal, financial and care planning”.  

According to Alzheimer’s Australia, one in two people want to choose their own care options through advance care directives, yet 49%  have not taken any actions to prepare for an event where they may lose the ability to make decisions.    

Liz Fenwick, chairperson of the NCAC Ethics Subcommittee, provided her own personal story entitled From a Family Carer for the introduction to the report, which she referred to as an essential reference tool for people with dementia, 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.

Click here to download End of Life for People with Dementia: Part One

Tags: advance-care-directive, advance-care-plan, aged-care, aged-services-learning-and-research-centre, aged-services-unit, ageing, alzheimers, alzheimers-australia, colleen-cartwright, dementia, end of life, end-of-life-plan, john-watkins, liz-fenwick, southern-cross-university,

1 thought on “Be prepared!

  1. i deliver dementia training in Qld and particularly when talking to community workers I stress the importance of families and the person diagnosed to put things in place then. I feel there needs to be more education for families so they know the road they are on, and understand the person with the diagnosis rather then being hurt, then they can be there for them, and give them a good quality of end of life. being with the people who love them rather than relying on strangers (some of them are very good, but some of them are not as well)for their security and safety.
    sorry I’m on my little box. barbt

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