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Australians with dementia deserve better end-of-life care

on Wednesday, February 12, 2014

A survey released today shows an alarming disparity between the wishes of people with dementia and their actual experience in residential or community care as they near the end of their lives.

The report identified a number of barriers to the quality of end-of-life care for people with dementia, including lack of advance care plans, inadequate pain management, a hard-to-navigate palliative care and hospices system and poor understanding of legal options amongst clinicians and aged care staff.

President of Alzheimer’s Australia Ita Buttrose spoke this morning at a joint event between Palliative Care Australia and Alzheimer’s Australia, expressing her concern with the outcomes of the report.

“Nearly a third of care professionals are not aware that people have a legal right to refuse food and artificial hydration,” Ms Buttrose said.

Alzheimer’s Australia Chief Executive Glenn Rees said he was not surprised by the findings of the survey, as they fit with the context of the association’s work concerning these recurring issues.

“A story that often comes up is the failure of the professionals to adhere to the wishes of the person with dementia,” Mr Rees said.

“The point is that people with dementia have rights,” he said.

Mr Rees said that with family or community care the concern stems more from a lack of awareness about community services available, particularly palliative care and hospices.

“The palliative care and hospice movement has grown up with a focus on cancer and it has taken a while for those services to focus on other chronic diseases, namely dementia,” he said.

With professional care, Mr Rees identified staff training and education as the primary issue for improvement.

“Across the board there seems to be a failure in the system for preparing staff for the duties they have to perform,” he said.

In an attempt to address these matters, Ms Buttrose today launched Start2Talk, a website created by Alzheimer’s Australia in partnership with Pallaitive Care Australia, to instigate the difficult conversation about a loved one’s financial, lifestyle and health care decisions.

“It is worrying that most people with dementia have not documented their wishes for end-of-life care. This leaves both families and health professionals unsure of what should be provided,” Ms Buttrose said.

Mr Rees said that advance care plans need to be addressed from the early diagnosis stage of dementia, and should continue to be a point of discussion throughout the progression of the disease.

“Advance care plans should not remain a static document. They should be living, as people’s views may change,” he said.

For more information on how to better prepare for a future with dementia visit the Start2Talk website.

My Care Path Aged Care Consultants