Dementia Australia and Palliative Care Australia recently 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, the organisation is 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,” Ms. McCabe said.
“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.”
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,” Ms Callaghan said.
“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.”
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,Palliative Care Australia 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.
“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.
This is an excellent initiative and report. So essential and necessary for the palliative care team to understand the unique dementia needs - especially when the patient is suffering with pain but cannot communicate. Thank you.