Australia must improve palliative care for people with dementia
A blog post written by the Dementia Australia Policy Team, Dementia Australia
Did you know that dementia is currently the second leading cause of death in Australia? It is the leading cause of death of Australian women.
Many people, even people who work in the health and aged care systems, don’t understand the terminal nature of dementia. This means that people living with dementia experience challenges in accessing appropriate palliative care services and having their end of life needs met.
Dementia is a progressive neurological condition. It is not a natural part of ageing. It is a terminal condition and there is currently no cure. [1]
On average, people with dementia survive for three to ten years after their diagnosis. [2] A range of factors including age, gender, type of dementia, the person’s comorbidities, and the severity of the illness at the time of diagnosis can impact this trajectory.
Unfortunately, people in the later stages of dementia often experience unrecognised or poorly managed pain. Although they may not be able to articulate their symptoms, they often express pain through body language, emotional responses, behaviours and physiological changes. Also, people with dementia are three times more likely to receive emergency interventions and invasive procedures than people of comparable age with a different terminal illness. [3] Once in the end of life stage, people with dementia face frequent hospitalisations and may be given unnecessary procedures and treatment. They can be unsuitably admitted into acute beds in unfamiliar and stressful settings where staff may not have the capacity or the specialised training and skills to recognise and provide individually tailored palliative care for people with dementia. As a result of this, people with dementia often end up being caught in a cycle of transfers from home to hospital to residential aged care and back to hospital.
Palliative care for people living with dementia should be available when and where it is needed, including in homes, residential aged care, hospice care, and acute care settings. Australia needs to improve the provision of palliative care services for people living with dementia. We need health and aged care staff who are appropriately skilled to deliver end of life and palliative care to people with dementia.
An example of how a palliative approach can support people with dementia is the Nightingale Program. This is a nurse led model, staffed by nurses who specialise in both dementia and palliative care. The Nightingale Program is the only specialist palliative dementia program of its kind in Australia. Working in partnership with a geriatrician and other stakeholders, the program provides person-centred care from the point of diagnosis to end of life. The program is funded by The Rosemary Foundation for Memory Support and is currently only available to people living in metropolitan South Australia. Dementia Australia is advocating for expansion of this program across Australia.
Palliative care services for people with dementia are inconsistent and inequitable. Australia must improve palliative care services and end of life care for people with dementia. Dementia Australia has published a discussion paper which examines this issue and provides recommendations to improve the provision of quality end of life and palliative care to people with dementia, their families and carers. Dying Well. Improving palliative care for people with dementia is available at https://www.dementia.org.au/about-us/publications/discussion-papers.
References
- Australian Bureau of Statistics. Causes of death [Internet]. 2019 Nov 29 [updated 2019 Sept 15; cited 2019 Nov 29].
- Brodaty H, Seeher K, Gibson L. Dementia time to death: a systematic literature review on survival time and years of life lost in people with dementia. Int Psychogeriatr. 2012 Jul;24(7):1034-45. doi: 10.1017/S1041610211002924. Epub 2012 Feb 13.
- Mitchell SL, Kiely DK, Jones RN, Prigerson H, Volicer L, Teno JM. Advanced dementia research in the nursing home: the CASCADE study. Alzheimer Dis Assoc Disord. 2006 Jul-Sep;20(3):166-75.