The Advance Project: Initiating ACP and palliative care for people living with dementia through training and resources for care providers

A blog post written by Professor Josephine Clayton, Dr Srivalli Nagarajan, Kelly Arthurs, Madeleine Juhrmann, and Marie Alford from HammondCare and Professor Jennifer Tieman from CareSearch

The Advance Project is a National Palliative Care Project, funded by the Australian Government since 2016 and led by HammondCare. Using funding from previous National Palliative Care Projects grant rounds, the Advance Project developed a unique, comprehensive evidence-based toolkit and multi-modal training resources 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 without cognitive impairment.

In 2020-2023 we will tailor the existing Advance Project resources for use with people living with dementia, and develop new resources and training to enable primary and aged care professionals to:

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

This new phase of the Advance Project will help address all six guiding principles of the National Palliative Care Strategy, as follows:

Palliative care is person-centred care – The training and resources of the Advance Project will be respectful of, and responsive to, the individual needs, preferences and values of people living with dementia and enable individuals and their families to be involved in decision-making about their care.

Death is recognised as a part of life – The Advance Project will champion early and ongoing ACP within primary and aged care settings.

Carers are valued and receive the support and information they need – Resources will be developed specifically for carers and family members of people living with dementia to assess their needs for support and information.  

Care is accessible – The Advance Project recognises that people living with dementia are an under-served population group within the palliative care space. We will address this gap through the development of dementia specific ACP and palliative care resources and training.

Everyone has a role to play in palliative care – The Advance Project training and resources will be developed for use in a multi-disciplinary environment and specifically focus on building capacity of frontline aged and primary care staff.

Care is high-quality and evidence based – The Advance Project toolkit and training program will be informed by literature reviews, in addition to extensive input and feedback from our expert advisory group and consumer representatives.

The Advance Project training will be targeted towards primary and aged care staff 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 living with dementia and screening for PC needs, facilitating earlier attention to ACP and PC and enabling staff to address the persons’ and caregivers’ identified needs and concerns about ACP and PC more efficiently.

The resources and online training will be accessible nationally. Complimentary train-the-trainer support will be provided in each state and territory via workshops and videoconferencing, enabling the online resources to be utilised in face-to-face training sessions held by local care providers. 

During this funding period (2020-2023) we will also continue to promote and enable access to the current Advance Project resources and online training materials for use with people who do not have cognitive impairments. To access the current resources and training go to www.theadvanceproject.com.au and for further information please contact us on AdvanceProject@hammond.com.au

	Professor Josephine Clayton – Director, Centre for Learning & Research in Palliative Care, HammondCare and Professor of Palliative Care, The University of Sydney
	Dr Srivalli Nagarajan – Project and Evaluation Coordinator, The Advance Project
	Kelly Arthurs – Palliative Care Nurse Consultant, The Advance Project
	Madeleine Juhrmann – Research Assistant, Centre for Learning & Research in Palliative Care, HammondCare
	Marie Alford - Head of Business Development, Dementia Centre, HammondCare
	Professor Jennifer Tieman - Director, CareSearch