Resources give staff confidence for end-of-life conversations with people with dementia
An article written by Professor Josephine Clayton Director of Palliative Care Research & Learning, The Palliative Centre, HammondCare
The importance of planning for end of life is well known yet healthcare professionals such as those in aged and primary care, often find it difficult to initiate these courageous end-of-life conversations.
Sadly, it is often the case that Australian aged care residents and clients living with dementia don’t have the same opportunities to express their needs and wishes for care at the end of life.  And access to palliative care and support for their families and carers during this difficult time is often lacking, resulting in avoidable suffering for the person with dementia and their loved ones.
Providing high-quality end-of-life care for people with dementia has been identified as a key challenge, due to a range of issues. People with dementia experience an uncertain illness and care trajectory, which can include repeated, stressful transitions between different care settings. During the final year of life, it is common for people with dementia to experience symptoms such as pain, agitation, pressure ulcers and pneumonia. A common misperception in the community, and even among some care providers, is that dementia is not a ‘terminal’ condition.  This misunderstanding makes discussions and proactive planning about future care needs difficult, especially in aged care settings. 
The Advance Project Dementia aims to help address these needs and provide practical and accessible resources that build the confidence of aged and primary care professionals to initiate conversations that enable people living with dementia to experience quality end-of-life care.
Tailored resources for frontline staff working in aged and primary care
The Advance Project Dementia Toolkit includes dementia-specific training and resources, informed by literature reviews and extensive input and feedback from the expert advisory group, GPs, nurses, allied health professionals, aged and primary care managers, careworkers, and people living with dementia and their families.
The free online toolkit is specifically designed for clinicians, managers, and careworkers in aged care and primary care settings and builds skills in initiating conversations about advance care planning and assessing the palliative care needs of people living with dementia. Training videos and eLearning modules feature interactive case studies based on real-life scenarios and give frontline staff tips and strategies that promote confidence to start those challenging conversations with the person living with dementia and their families.
It’s important to have ongoing conversations about the person’s end-of-life wishes initiated by staff members who already know the person with dementia and their family, and in a way that is respectful, supportive, and centred to the care of the person. The resources support a relationship-based approach to care that enables people living with dementia to have the opportunity 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.
The Advance Project Dementia is part of the larger collaborative project led by HammondCare in collaboration with various health organisations and universities across Australia, including our key partner CareSearch from Flinders University. The Advance Project is one of the National Palliative Care Projects, funded by the Australian Government.
The Advance Dementia Toolkit: http://www.theadvanceproject.com.au/dementia
Professor Josephine Clayton
Palliative Care Research & Learning,
The Palliative Centre, HammondCare
- Royal Commission into Aged Care Quality and Safety. Final report: Care, dignity and respect - Volume 1 summary and recommendations (1.11MB pdf). Canberra, ACT: Commonwealth of Australia; 2021.
- Poole M, Bamford C, McLellan E, Lee RP, Exley C, Hughes JC, Harrison-Dening K, Robinson L. End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliat Med. 2018 Mar;32(3):631-642.
- Borbasi JAL, Tong A, Ritchie A, Poulos CJ, Clayton JM. “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia. BMC Geriatr. 2021 May 12;21(1):306.