International dementia expert Professor Julian Hugues speaking on the national lecture tour for Alzheimer’s Australia
By Natasha Egan
An international dementia expert has this week called for a dementia-specific palliative approach to care for people with dementia during his visit to Australia for a national lecture tour for Alzheimer’s Australia, which is supported by Bupa Health Foundation.
Professor Julian Hughes, a consultant in old age psychiatry based at North Tyneside General Hospital in the UK, is using the lecture tour to launch his most recent paper on end of life care, Models of Dementia Care: Person-Centred, Palliative and Supportive.
“Dementia has a long and unpredictable trajectory that can make it difficult to know when palliative care services should begin,” Prof Hughes said.
“Unlike other chronic diseases, such as cancer, a person with dementia loses the ability to be directly involved in decision making at end of life because of loss of capacity.”
The paper considers whether there is a need for dementia-specific palliative care services and when end of life care discussions should begin, Prof Hughes said.
In his paper, Prof Hughes said if dementia was acknowledged as a terminal condition, then the best approaches to providing care and support must be considered in that context.
He has outlined three philosophies of care for discussion – person-centred care, palliative care and supportive care – and highlighted that the approaches overlapped and contained many similar principles.
In concluding comments, Prof Hughes said the experience of care for someone with dementia had to be the experience of being supported.
“The point about supportive care is that, not only does it extend across the complete time course of the condition, not only is it intended to be broad in the sense of biopsychosocial and spiritual, but – at a practical level – nothing is ruled out and everything should be ruled in,” he said in the paper.
To achieve the vision of person-centred, palliative and supportive dementia care, change is needed, he said.
For example, people with dementia, in solidarity with their support network, must seek ways to live; professionals must embrace therapeutic optimism and rule out nothing; and care homes must move from being institutions to become therapeutic communities, Prof Hughes outlined in his paper.
A second paper, Wrestling with Dementia and Death, by Dementia Collaborative Research Centre researcher Professor Jenny Abbey is also being launched on the lecture tour.
The paper discusses practical issues faced by people with dementia and their families as the illness progresses towards death including symptom control, food and water, medications, hospitalisation, home and residential care, and recognising signs of imminent death.
CEO of Alzheimer’s Australia NSW John Watkins said the tour would give people living with dementia and their carers guidance to better plan for appropriate end of life care.
“Our hope is that Professor Hughes’ tour will prompt this important discussion between family members and carers as well as encouraging policy makers to think about the changes that are needed in health policy to ensure best quality end of life care for people with dementia,” Mr Watkins said.
Professor Hughes’s tour has so far taken in Darwin, Sydney, Newcastle and Brisbane, and will continue in Canberra, Melbourne, Hobart, Adelaide, Perth and Albany, where it finishes 5 July.
Future dates and locations
- 28th June (Friday) Canberra workshop
- 1st July (Monday) Melbourne workshop titled Who Decides? Dementia and decision making
- 2nd July (Tuesday) Hobart workshop
- 3rd July (Wednesday) Adelaide workshop
- 4th July (Thursday) Perth workshop
- 5th July (Friday) Albany workshop
For further information on Professor Hughes’ tour, visit the Alzheimer’s Australia’s website. Contact the relevant state/territory office to register for a workshop.
View and download these papers and others here: Alzheimer’s Australia numbered publications or go directly to a pdf of the reports by clicking on the cover image below.
