Palliative care services in Australia are inappropriate for people living with dementia, an expert has told Community Care Review.
“A lot of palliative care is not suited for people with dementia,” said geriatrician and palliative care physician Elissa Campbell. “Palliative Care came out of the modern hospice movement which was designed for people with diagnoses like cancer where they had a good level of function that dropped off right at the end and then they would access specialised palliative care services. Whereas, with dementia, that decline in function occurs over a number of years,” Dr Campbell told CCR.
In 2020, Dr Campbell – who is also president of Palliative Care WA – was awarded a fellowship by the WA Department of Health to explore successful overseas models of palliative care for people with dementia that could be used in Australia.
Dr Campbell’s research took her around the world to the Netherlands, Belgium, Ireland, Italy, the United Kingdom, the United States of America and Singapore. “I found common components to successful models of care that I think we need to adapt in Australia,” she said. “These include things like ensuring carers are very well supported throughout the entire trajectory of a person’s diagnosis of dementia.”
Dr Campbell would also like to see Australian palliative care teams employ care navigators, “which is having a single point of contact for the person with dementia and their carer to help navigate the plethora of health and community services that exist and also link them in with more specialised palliative care services when they’re required.”
Dr Campbell told CCR there are some shining examples of palliative care models for people with dementia in Australia such as the Nightingale Program run by Dementia Australia in South Australia. “That’s an excellent service model,” she said.
She also mentions dementia care specialists HammondCare. “They have a number of successful models of care that are recognised internationally.”
Looking further afield, Dr Campbell points to Singapore and an innovative palliative care program established by Associate Professor Allyn Hum.
“She used all of the existing evidence from around the world to develop a specialised palliative care service for people with advanced dementia,” said Dr Campbell. “She has managed to get that model funded for the entire island of Singapore for up to two years.”
Dr Campbell told CCR about another successful palliative care model she discovered in the US called Care Ecosystem. “They use navigators who are a link between the healthcare team and the person with dementia. They are the first point of contact,” said Dr Campbell. “And they receive training in dementia care and palliative care.”
Dr Campbell will be sharing more insights on optimal palliative care models for people with dementia at the 2023 Oceanic Palliative Care Conference – which takes place in Sydney 13 – 15 September.
Follow Community Care Review on Facebook and LinkedIn and sign up to our newsletter.
