Action needed on palliative care and dementia, say peaks

Dementia Australia and Palliative Care Australia have released a joint policy statement calling for improved awareness of the specific end-of-life care needs of people with dementia.

In the statement released last week, the two national peak bodies recommend improved training for aged and community care staff to expand their knowledge of palliative care and dementia.

Dementia Australia CEO Maree McCabe said people living with dementia should also be encouraged to engage in advance care planning conversations with their families and the health professionals involved in their care.

“Communicating their wishes in the early stages is critical to ensuring people living with dementia are empowered to exercise choice and control over the care and treatment they wish to receive at the end of life.

“Having open and informed conversations between key support people and the person living with dementia enables their wishes to be documented in an advance care plan to best ensure they receive appropriate, compassionate and timely palliative care, which includes pain relief and symptom management,” she said.

Palliative Care Australia CEO Liz Callaghan said having these discussions allows the opportunity for the person living with dementia to choose and prepare a substitute decision-maker, who may be required to make decisions when the person is no longer able to communicate their own preferences.

“The unpredictable course of the disease often presents issues around capacity for decision making, difficulties in communication and lack of community understanding of the disease.

“This results in many people living with dementia struggling to access appropriate palliative care and this is especially difficult for people from diverse backgrounds and those with behavioural symptoms of dementia,” she said.

The key points in the statement recommend and advocate for improved awareness and understanding of the unique palliative care needs of people living with dementia, their families, carers and community.

• There must be early involvement of the person, where possible, and their family and carers, where appropriate, in decision making, identification of goals, and delivery of palliative care.
• A flexible model of care is required which enables health and care professionals to provide the right care, at the right time, and within the right setting to accommodate the changing needs of people living with dementia, and their carers, as the disease progresses.
• Improved access to specialist palliative care services in the community is needed to address the complex needs of dementia and to enable greater choice in the type of care that is provided.
• Health and care professionals need additional training in palliative care, end-of-life care, advance care planning, the assessment of symptoms such as pain and distress, and how to appropriately identify, care for and manage the behavioural and psychological symptoms of dementia.
• All health and aged care facilities must be equipped and supported to provide appropriate care to people with behavioural and psychological symptoms of dementia so that no one is turned away from these services due to a diagnosis of dementia.
• People living with dementia and their carers need to be supported, through improved access to information and discussions with health professionals, to consider and document their end-of-life care wishes through advance care plans as soon as possible following diagnosis or onset of dementia symptoms.
• Improved access to support and respite is needed for families and carers of people living with dementia.
• Nationally consistent advance care planning legislation is needed to reduce jurisdictional confusion, provide protection to health professionals and community members, and allow care recipients to transition across borders to be closer to family and their community.
• Advance care plans should be linked to My Health Records, if the person living with dementia or their decision maker wishes, to ensure they can be accessed by all health professionals involved in the care of the individual in a timely manner.

“It is critical that people living with dementia and carers are able to access high-quality palliative care that is responsive, respectful, culturally appropriate, and which addresses the needs of the person receiving the care, respecting the person’s individuality, and promoting a good quality of life,” Ms Callaghan said.

Download the joint policy statement, Palliative Care and Dementia 2018, here.