Better end of life care for Aussies with dementia

The survey report, End-of-Life Care for People with Dementia, commissioned by Alzheimer’s Australia from Piazza Research with support from the Bupa Health Foundation, explored the experiences of both consumers and health workers and identified a number of barriers to quality end of life care for people with dementia.

These include lack of advance care plans, poor understanding of legal options, inadequate pain management, and lack of access to hospices, palliative care specialists or community palliative support.

Speaking at a joint Alzheimer’s Australia and Palliative Care Australia Parliamentary Friends Event, Ita Buttrose, national president of Alzheimer’s Australia, said she was surprised by the outcomes of the report.

“The survey results provide a clear indication of why the endoflife wishes of many people with dementia are not carried through,” Ms Buttrose said.

“Carers often tell us of the difficulties they have in getting access to palliative care services and hospices but this survey also has told us that many health professionals are not aware of the difficulties consumers face.

“In contrast to the views of family carers, three quarters of the care professionals surveyed believed people with dementia do have access to palliative care services.

“It also concerns me that in many cases care professionals are unsure of what the legal options are for people with dementia at end of life. Nearly a third are not aware that people have a legal right to refuse food and artificial hydration.”

Professor Patsy Yates, president of Palliative Care Australia, said: “People with dementia deserve quality palliative care that respects their wishes and dignity. Advance care planning is a useful tool to help people document their end of life wishes.

“However, the confusion around advance care planning practices cannot continue. We need to ensure all health professionals and consumers are provided with education around palliative care and advance care planning, and consistent advance care planning legislation and terminology would go a long way to reducing this uncertainty,” Professor Yates said.

In an attempt to address some of these issues, Ms Buttrose also launched Start2Talk, a consumer focused website created by Alzheimer’s Australia in partnership with Palliative Care Australia, Consumers Health Forum, Carers Australia, COTA and other health and aged care organisations, to help people plan for their own or a loved one’s future financial, lifestyle and health care decisions.

This website includes information and links to local resources related to planning ahead in all states and territories.

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

“People also find it difficult to know how to start the conversation about end of life care or where to begin with planning.

“Start2Talk which has been developed through the National Quality Dementia Care Initiative with funding from Bupa Care Services and the JO and JR Wicking Trust will be a valuable support.”

Key Findings of the End of Life Care Survey

• 75% of care professionals indicated people with dementia have access to palliative care services within their healthcare setting, by contrast the majority of former family carers reported that they person they cared for did not have access to palliative care specialists (58%) or hospice (68%) at the end of life.
• Most people (49%) who had cared for someone with dementia felt there was no support available for them to keep the person with dementia at home.
• 26% of family carers of someone who died from dementia were dissatisfied with their end of life care.
• 26% of care professionals indicated that they had not received any training on palliative care and 28% had not received training on communicating with non-verbal patients.

The Start2Talk website can be found at: www.start2talk.org.au