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A suite of palliative care resources specifically designed to meet the needs of people living with dementia was launched this week.

The resources will be sent to all aged care providers.

Developed by Palliative Care Australia (PCA) and Dementia Australia in partnership with the Parliamentary Friends of Palliative Care and the Parliamentary Friends of Dementia, the What Matters Most resources is a new addition to the PCA Dying to Talk Initiative.

“These resources were developed for health and aged care workers to support older people, including those living with dementia, to reflect and have conversations about What Matters Most to them and what they might want if they were very sick or at the end of their life,” said PCA CEO Rohan Greenland.

“We know that dementia is already the leading cause of death for women in Australia, and the second overall. Those who provide palliative care, including specialists, general practitioners and other health and aged care professionals are working with people living with dementia and their families on a daily basis to meet their unique care needs.

“For this reason, the relationship PCA has with Dementia Australia is essential as we work together to advocate for the growing number of people who will live with and eventually die with their dementia diagnosis and require appropriate, timely palliative care.”

Dementia Australia CEO Maree McCabe said that dementia was a terminal illness and appropriate palliative care was an essential element of quality care and end of life care for people with dementia, and for their families and carers.

“While we acknowledge the contextual complexities of dementia care within the different health care and community settings, it is essential that streamlined services are developed and accessible for more effective home and community palliative care experiences,” she said.

“Improving palliative care for people with dementia, no matter where they live, must be a policy priority, Australia-wide, across the states and territories.”

The resource includes:

  • A What Matters Most Discussion Starter written from the perspective of the older person, with questions about the person, their health and what they might want at the end of their life.
  • A Health and Aged Care Worker Facilitator Guide to assist workers to prepare for and have these important conversations with older people noting the specific needs of people living with dementia.
  • A set of “What Matters Most Discussion Cards that can be used as an ice breaker or prompts when working through the other materials.

“PCA is very pleased that the full suite of resources will soon be available for everyone to access on the Dying to Talk website, including the Discussion Starter and Discussion Card sets in 10 languages: Arabic, Croatian, Greek, Hindi, Italian, Maltese, Polish, Simplified Chinese, Spanish and Vietnamese,” Mr Greenland said.

The Dementia Australia discussion paper, Dying well – Improving palliative and end of life care for people with dementia is available here.