" Palliative Care Australia (PCA) and Dementia Australia partnered in Parliament House Canberra to bring attention to the palliative care needs of people living with dementia. "
Discussing the palliative care needs of people living with dementia

In November, Palliative Care Australia (PCA) and Dementia Australia partnered with the Parliamentary Friends of Palliative Care and the Parliamentary Friends of Dementia in Parliament House Canberra to bring attention to the palliative care needs of people living with dementia.

Launching a suite of resources specifically designed to ensure they meet the needs of people living with dementia, the event was attended by the Governor-General, His Excellency David Hurley, and Her Excellency Mrs Linda Hurley. His Excellency is Patron of Dementia Australia and Their Excellencies are joint Patrons of PCA.

“As Patron of both Palliative Care Australia and Dementia Australia, I am very pleased the organisations are working in partnership,” the Governor-General said.

“Both organisations bring expertise, compassion and commitment to their mission and the services they provide to Australians when they, their families and loved ones, need them the most.”

During the event PCA CEO Rohan Greenland and Dementia Australia Board Chair, Professor Graeme Samuel AC highlighted the work both organisations have accomplished to support people living with dementia, particularly as they start to have conversations about what matters most to them and their preferences for care towards the end of their life.

Mr Greenland said 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,” Mr Greenland said.

“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 dementia is a terminal illness and appropriate palliative care is 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,” Ms McCabe 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.”

Speaking at the joint Parliamentary Friends event, Mr Greenland and Professor Samuel launched a suite of resources specifically designed to ensure they meet the needs of people living with dementia.

Mr Greenland was pleased to present the What Matters Most resources as a new addition to the PCA Dying to Talk Initiative. Mr Greenland stated the 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.

Mr Greenland thanked the Australian Government and the Department of Health for the Dementia and Aged Care Services (DACS) fund which supported the production of these resources.

“These resources are incredibly valuable to support health and aged care workers to have early conversations with older Australians about their end of life preferences, and were only made possible with this funding from government,” Mr Greenland said.

“PCA also acknowledges Dementia Australia, Aged & Community Services (ACSA), Leading Age Services Australia (LASA), HammondCare and the aged care providers involved in development of What Matters Most, and importantly the people living with dementia and their carers for their invaluable feedback. I am also pleased that Mr Les Makai, the person responsible for the amazing artwork used in the resources was able to join us.”

A full set of resources will be sent to all aged care providers, including:

  • 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.
  • 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 also presented at the events and is available here.

Both PCA and Dementia Australia are calling on all Australian governments across systems to consider a flexible model of care that enables 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.

“Good palliative care is an essential element of quality care and end of life care for people with a terminal illness. I am seeking a commitment from all Members of Parliament to advocate in their party rooms and with colleagues to elevate this message together,” said Professor Samuel.

“People with dementia deserve to experience dying well and it is our collective responsibility to make that happen.”

 Posted: December 15th, 2019
Discussion

Susan Gerichter said:

Could these resources be made to educators also? These tools would be very useful to those of us endeavouring to instruct aged care employees to follow best practice with compassion, respect and dignity for the consumer.

Heather Macklin said:

Great now it just needs to hook in with with the Aged Care model which really needs direction on this exact issues.

Laura said:

Better Palliative care for people affected by dementia... good words., but what exactly consists of? My husband died almost 10 years ago, he was affected by dementia and was left to die in a hospital bed with no doctor or knowledgeable nurse to assist him or talk to us.. It was horrible! Yes I want to know what this change in palliative care is all about.

Alison Morgan said:

Great to have resources but to be effective it needs to be followed up with training to support workers giving direct care, the PCA’s. This is most appropriate in the workplace, rather than the initial accreditation process.

Alison Morgan said:

Great to have resources but to be effective it needs to be followed up with training to support workers giving direct care, the PCA’s. This is most effective in the workplace, rather than the initial accreditation process.

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