Recognise End of Life - Dementia

Recognise End of Life

What is End of Life?

The Australian Commission on Safety and Quality in Health Care state: “People are ‘approaching the end of life’ when they are likely to die within the next 12 months.6 This includes people whose death is imminent (expected within a few hours or days) and those with:

Recognise End of Life - ELDAC Care Model
  • advanced, progressive, incurable conditions
  • general frailty and co-existing conditions that mean they are expected to die within 12 months
  • existing conditions, if they are at risk of dying from a sudden acute crisis in their condition
  • life threatening acute conditions caused by sudden catastrophic events.” 6

People living with Dementia and End of Life Care

Care at the end of life is palliative care. In keeping with the broad definition of end of life, end of life care encompasses the broad set of health and community services that care for the population at the end of their life.

Dementia is recognised as a terminal condition 3 for which palliative care, end of life or specialist palliative care may be appropriate, but will vary for each individual. 7 Unfortunately, there is currently no single prognostication tool for accurately predicting the need for palliative care.

Surprise Question

Recognising a person’s end of life provides opportunity for assessment of palliative care needs and planning. There is no one tool that identifies when a person is approaching this time. The surprise question is suggested as one trigger. For a specific person in your care ask yourself ‘Would you be surprised if this person would die in the next 12 months?’ However, accuracy of this question is relatively low for people without a cancer diagnosis. 8

Supportive and Palliative Care Indicators Tool (SPICTTM)

The Supportive and Palliative Care Indicators Tool (SPICTTM) (188kb pdf) is often used in addition to the surprise question. The SPICTTM has two sections called General Indicators and Clinical Indicators. To identify that someone may need end of life care, at least one of the six general indicators and one of the clinical indicators would have positive response.

The SPICTTM includes specific clinical indicators for dementia/frailty:

  • Unable to dress, walk or eat without help.
  • Eating and drinking less; difficulty with swallowing.
  • Urinary and faecal incontinence
  • Not able to communicate by speaking; little social interaction
  • Frequent falls; fractured femur.
  • Recurrent febrile episodes or infections; aspiration pneumonia.

Visit the SPICTTM website for user guidelines and further information.

Remember end of life care may also be required for a person that has an acute deterioration. There is more information about this in the Respond to Deterioration section of the Dementia Toolkit.

ELDAC Toolkit Educational Video

Watch the videos on Recognise End of Life for Residential Aged Care and Home Care that will help you to define end of life; recognise the common signs of end of life and understand the use of end of life tools, such as SPICTTM and Surprise Question.

Page last updated 08 December 2023