Fran McInerney, Professor of Dementia Studies and Education at the Wicking Dementia Research & Education Centre, University of Tasmania, Hobart, Australia, explores the background to and some implications of the longer article she and colleagues published in the March issue of Palliative Medicine.

My work in dementia palliation research, education, and clinical practice spans over two decades, and the Wicking Dementia Research and Education Centre at the University of Tasmania in Hobart, Australia (1) has been home to my and my colleagues’ collective dementia-related activities since 2008.

While dementia is a complex syndrome logically attracting attention from fields including prevention, cure, psychological support, and rehabilitation, at this time it also remains unequivocally a terminal condition. True dementias result in the progressive and irreversible death of brain cells, which is ultimately incompatible with life; Isaacs and Caird (2) coining the term ‘brain failure’ to describe this phenomenon more than 40 years ago. The progressive course of the dementias involves significant and multiple symptoms, systematically outlined by Mitchell and colleagues in 2009. (3) It was this second paper that arguably mobilised attention around the life-limiting nature of dementia and associated needs, for which palliative care has emerged, albeit perhaps tentatively, as a fitting frame.

Our own and others’ work with health providers and the broader community has led us to the conclusion that dementia (including its association with mortality) is not well understood. (4) We believe this matters, for the quality of life of both people living with and dying from dementia and those who care for them. This commitment led us to develop the Understanding Dementia Massive Open Online Course (UDMOOC) (5) in 2013, which addresses normal anatomy, pathology, symptomology and care approaches across the dementia trajectory, and which has attracted over 140,000 participants worldwide.

Our recent paper explored UDMOOC participants’ understanding of palliation. While pleasing to see that there was a general awareness of the tenets of palliative care, it was concerning to us that our respondents – the majority of whom had pre-existing experience of dementia care needs – did not nominate links between dementia and this care frame. Our findings at a minimum give rise to the following questions:

Is it of relevance to palliative care that both consumers and health providers may not be sufficiently health literate to recognise dementia’s terminal nature and/or the relevance of palliative services?

Do we have a responsibility to raise awareness of the role of palliation for this global group of over 45 million people?

What is our capacity and capability to respond to dementia needs from within a palliative frame?

With the number of people living with and dying from dementia worldwide expected to triple by 2050, how do we position ourselves?

These are no small questions, but with dementia fast becoming the major cause of death in older adults and carrying a significant symptom load, we hope to see further and urgent discussion about this critical public health issue.

References and links

Wicking Dementia Research & Education Centre Homepage: http://www.utas.edu.au/wicking/home. Isaacs, B., Caird, F. 1976. ‘Brain Failure’: A contribution to the terminology of mental abnormality in old age. Age & Ageing, 5(4): 241-244. Mitchell, S., Teno, J., Kiely, D., Shaffer, M., Jones, R., Prigerson, H., Volicer, L., Givens, J., Hamel, M. 2009. The clinical course of advanced dementia. NEJM, 361(16): 1529-1538. Robinson, A., Eccleston, C., Annear, M., Elliott, K., Andrews, S., Stirling, C., Ashby, M., Donohue, C., Banks, S., Toye, C., McInerney, F. 2014. Who knows, who cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia. Journal of Palliative Care, 30(3): 158-165. Wicking Dementia Research & Education Centre – Understanding Dementia MOOC. Express your interest in the next course starting on 10 July 2018!

Read earlier Editor’s Choice posts on the EAPC Blog.

Read earlier posts on dementia on the EAPC Blog.

Read the full article, and many others on dementia, in this Special Edition of Palliative Medicine: Palliative Care in Dementia …

This post relates to a longer article, ‘How is palliative care understood in the context of dementia? Results from a massive online course’ by Fran McInerney, Kath Doherty, Aidan Bindoff, Andrew Robinson, James Vickers, published in Palliative Medicine, 2018, Vol 32 (3): 594-602. Article first published online: December 13, 2017. You can download the article here: https://doi.org/10.1177/0269216317743433