Background:

In 2020, dementia accounted for almost ten percent of all deaths in Australia, making it the second leading cause of death in the country. Despite this, people with dementia often miss the opportunity to discuss their plans and preferences for future health and end-of-life.

Staff working in aged care play a critical role in delivering quality palliative care to people living with dementia and supporting their carers/families. However, many staff report a lack of confidence and skills in initiating advance care planning (ACP) and palliative care for people living with dementia.

Aim:

To develop a dementia-specific toolkit for aged and primary care staff to improve their knowledge, skills and confidence in initiating ACP and palliative care needs assessment for people with dementia. 

Method:

A literature review, environmental scan, input from an expert advisory group and extensive stakeholder engagement informed development of the dementia-specific toolkit. Fifty-six stakeholders were interviewed across Australia, including people living with dementia, family members, general practitioners, aged and primary care nurses, aged care providers and peak bodies.

Results:

The toolkit includes a dementia-specific model and guide for initiating ACP and palliative care needs assessment at various stages of dementia, a suite of practical resources and eLearning. An essential resource from the toolkit is the Distress Observation Tool (DOT), developed to assist careworkers, family members, and health professionals in assessing, monitoring, and communicating the distress they observe in people living with advanced dementia. 

Conclusion:

The nationally available dementia-specific toolkit (www.theadvanceproject.com.au) is funded by the Australian Government.  It empowers aged and primary care professionals to support people living with dementia to express their needs and preferences for care at the end-of-life and have access to palliative care and support for their families and carers.