Australians with dementia need better end-of-life care

12 February, 2014

There is a disturbing gap between the perceptions of care professionals and carers of people with dementia about end-of-life care for people with dementia, according to a new report released today.

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 report 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 that she was surprised by the outcomes of the report.

“The survey results provide a clear indication of why the end-of-life 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 current 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, Ita 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 end-of-life 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.”

Visit the Start2Talk website

National Dementia Helpline: 1800 100 500
An interpreter service is available
(The National Dementia Helpline is an Australian Government Initiative)
Dementia is a National Health Priority Area www.fightdementia.org.au

-Ends-

Download the full version of the report

Read Ita's speech

Key Findings of the End of Life Care Survey:

Access to appropriate care
- 75% of Care Professionals indicated that 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 vast majority of health professionals (90%) indicated that further training on end-of-life care for people with dementia would be beneficial.

Wishes of the person with dementia
- A fifth (20%) of family carers were dissatisfied or very dissatisfied with adherence to the wishes of the person with dementia
- Nearly a third (31%) of care professionals experiencing a situation where they were unable to follow the wishes of a person with dementia regards to end-of-life care
- 14% of care professionals indicated that did not think or were unsure if patients had a legal right to refuse medical treatment or have existing interventions withdrawn.
- 29% did not think that people have the right to refuse food or fluids or were unsure,
- 22% indicated that they thought that refusal of antibiotics was not a legal option for people at end of life or were unsure.
- 38% of care professionals had not received any training on the legal rights of a person with dementia at end-of-life.

Planning
- Only 39% of family carers who had cared for a person with dementia at end-of-life reported that the person had an advance care plan. For those who did have an advance care plan, 34% had prepared a plan before or shortly after diagnosis with most plans being completed in the mid to advanced stages of the disease.

Management of Pain
- 22% of former carers felt that pain was not managed well at end of life for the person with dementia
- 41% of care professionals had received no training on assessment of pain in people who had dementia.
- 7% indicated they were uncomfortable with their ability to assess and manage pain for people with dementia
- 13% of care professionals did not think adequate pain control (if it might also hasten death) was a legal choice for people in Australia and 14% were unsure.

Key features of the Start2Talk website:
• Practical worksheets that consumers can complete on their own or use to structure a conversation with a loved or a professional helper
• Content that covers planning ahead for financial, lifestyle and healthcare decisions
• Separate sections for people who want to plan for themselves and for people who are planning with or for someone else
• The option of completing and storing worksheets on line or else printing them out and completing by hand
• Consumer-focused information and local links for planning ahead for all States and Territories
• Section for health and community care workers – with specific information for GPs, Aboriginal Health Workers and Multicultural Workers
• Information sheets in 30 languages
• Ability to send in your questions and have these answered by experts
• Opportunity to post your story and read about the experiences of other
• Formatted email message that a user can send to someone to let them know about the website

Download a copy of the media release