$1.2 million project to address advance care planning and palliative care for people with dementia

A critical gap in training and resources to support people with dementia accessing palliative care and advance care planning in aged care will be addressed through a new $1.2 million Australian Government grant for the successful Advance Project, led by HammondCare, working in collaboration with CareSearch, Flinders University

The funding announcement comes as the Australian Bureau of Statistics confirms dementia is the second leading cause of death in Australia and in January to May 2020, there were 5,794 deaths from dementia, up from the five year average for the same period of 5,026.*

Project lead, Prof Josephine Clayton, said the new funding would allow The Advance Project to develop dementia-specific resources and training in the next 18 months before rolling it out nationally to frontline aged and primary care staff in online modules and train the trainer courses.

Raising awareness that dementia is a life-limiting illness

J Clayton clinic patient 580“Feedback from previous work of The Advance Project and recent focus groups shows that many families, and some staff, are not fully aware that dementia is a life-limiting illness,” Prof Clayton said.

“Families can then experience significant trauma and guilt when the health of their loved one deteriorates and critical end of life decisions are required. And this in turn can place immense pressure on staff, who may also be unsure how to guide conversations and provide appropriate palliative care or support.

“It’s often challenging for families to decide to place their loved one into aged care, as they struggle to accept they can no longer meet the person’s needs, and then to be surprised to learn that dementia is terminal, can be devastating.

“In the public domain we have rightly championed the message that people live with dementia, but it can be an unwanted or shocking revelation that people also die of dementia, that it is a terminal illness.”

Getting difficult conversations out of the way

The Advance Project Nurse Educator/Mentor, Kelly Arthurs RN, said too often people with dementia and their families were not accessing the best healthcare options such as palliative care because of the gap in advance care planning support and resourcing.

“Helping aged care workers to understand this need, to be able to guide and develop advance care planning conversations, can make a significant difference,” Ms Arthurs said. “It’s not about morbidly focusing on death, but often a case of ‘getting a difficult conversation out of the way’ so we can ‘get on with living’. Or ‘hoping for the best but planning for the rest’, as we often say.”

Hospital often not the best option

Anecdotal evidence has shown that often, confronted with the deterioration of their relative, families are repeatedly requesting hospital admission, for distressing and unsuccessful interventions, when the real need is to find the best way to support their loved one in the final period of their life.

Aged care staff can then sometimes bear the brunt of frustration from emergency doctors and paramedics who consider these trips to hospital to be not in the best interest of the resident.

“We also know people living with dementia have less access to palliative care than, for example, people with cancer, and this is partly due to the longer trajectory of the illness but also the impact of cognitive impairment and lack of ‘death literacy’ for families and staff,” Prof Clayton said.

Trauma for families making unplanned decisions

“If conversations have not been held before dementia advances, families can find it very traumatic to make these decisions, to understand what their loved one would want, and what is best for them.

“Families usually need many hours to talk through these issues, and sometimes there is disagreement within families about what would be best for the person which adds to distress. And aged care staff often feel uncertain how to support families in this situation.

“This is why our project is absolutely vital - to find the right way to have these conversations at the right time, to help people living with dementia to have the best quality of life for the time they have left and to support their families.”

The Advance Project has successfully provided advance care planning and palliative care training and support to GPs and primary care nurses in recent years. The next phase of the project will now adapt some of these training programs and practical resources to develop a new suite of dementia-specific advance care planning and palliative care resources for front line staff working in aged care and primary care.

For more information visit www.theadvanceproject.com.au or email This email address is being protected from spambots. You need JavaScript enabled to view it.

Further background

The Advance Project led by HammondCare has developed a unique, comprehensive evidence-based toolkit and multi-modal training resource for team-based initiation of advance care planning (ACP) and palliative care (PC) in primary care and general practice settings. These resources were designed for use with people who have no cognitive impairment.

This new $1.2 million project, running three years from July 1, 2020, will tailor the existing Advance Project resources to be used with people living with dementia, while developing new resources to enable primary and aged care professionals to:

  • Initiate conversations about ACP with people living with dementia at different stages of cognitive decline.
  • Empower, prepare families to advocate for the person’s end of life care wishes in the future.
  • Identify people with dementia who would benefit from a structured assessment of their palliative and supportive care needs.
  • Systematically assess the palliative care needs of the person and assess their family’s needs for support and information.
  • Identify those people with dementia who would most benefit from referral to specialist PC.

The training will target primary care nurses and aged care nurses, case managers, care coordinators and care workers working in residential and community aged care, explaining how to use the resources in their everyday practice. The training will develop staff skills in initiating conversations about ACP with people with dementia and screening for PC needs, facilitating earlier attention to ACP and PC and enabling staff to more efficiently address the persons’ and caregivers’ identified needs and concerns about ACP and PC.

* 3303.0.55.004 - Provisional Mortality Statistics, Jan - May 2020