End of life discussion essential from time of dementia diagnosis

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Dementia Australia and Palliative Care Australia today released a joint policy statement emphasising the importance of encouraging end-of-life care discussions as part of the support a person receives when diagnosed with dementia.

Dementia Australia CEO Maree McCabe said while many people, with good support, live well with dementia, Dementia Australia are encouraging people 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.

Maggie Jones who cared for her husband Gordon, who passed away from dementia in December 2016, said when Gordon was approaching the end of his life, it was particularly important that he already had an advanced care plan and that she knew what his wishes were.

“This is especially critical for those with dementia, who will almost certainly be unable to articulate their wishes in the final stages of the disease”, she said.

“It is equally important for their loved ones at what is a very emotional and challenging time. The ability to think rationally in such circumstances is not necessarily feasible, so having a clear statement of preferences in terms of treatment relieves some of the pressure.”

In the statement, to support the best end-of-life outcomes for people with dementia, PCA and Dementia Australia called for aged care and community based services to train staff to expand their awareness and understanding of palliative care and dementia.

“Comprehensive palliative care for people living with dementia, and appropriate support for carers, should be available when and where it is needed, including community or home-based care, residential aged care, hospice care, and acute care settings which requires building on the skills of health professionals, staff, families and the community to meet the specific needs of people living with dementia,” Ms McCabe 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.
The joint policy statement, Palliative Care and Dementia 2018 can be downloaded at www.dementia.org.au and www.palliativecare.org.au.


Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and carers. It provides advocacy, support services, education and information. An estimated 425,000 people have dementia in Australia. This number is projected to reach more than 1.1 million by 2056. Dementia Australia is the new voice of Alzheimer’s Australia. Dementia Australia’s services are supported by the Australian Government. www.dementia.org.au

Palliative Care Australia is the national peak body for palliative care in Australia. PCA provides leadership on palliative care policy and community engagement. Working closely with consumers, its Member Organisations and the palliative care and broader health workforce, PCA aims to improve the quality of life and death for people with a life- limiting illness, their families and carers. www.palliativecare.org.au

National Dementia Helpline 1800 100 500

Interpreter service available

(The National Dementia Helpline is an Australian Government Initiative)

Dementia is a National Health Priority Area

Media contacts: Christine Bolt, 0400 004 553 / [email protected]; Grace Keyworth, 0422 040 576 / [email protected]

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.