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- Advance Care Planning
- Recognise End of Life
- Assess Palliative Care Needs
- Provide Palliative Care
- Work Together
- Respond to Deterioration
- Manage Dying
- Bereavement
Home Care Residential Aged Care End of Life Law Toolkit DementiaClinical CareToolkit Education Other ToolkitsAdvance Care Planning Recognise End of Life Assess Palliative Care Needs Provide Palliative Care Work Together Respond to Deterioration Manage Dying BereavementAssess Your Knowledge Practice ExemplarsRecognise End of Life
Recognising when a person with dementia is approaching end of life provides an opportunity for assessment of palliative care needs, planning care and providing support. It is important to support the person with dementia to live well and remain connected within their community throughout the course of their life-limiting illness, including at the end of life.
The period of end of life is when a person is living with, and impaired by, a fatal condition. The trajectory of this condition may be ambiguous or unknown [1 & 2, p27].
To inform care, the Australian Commission on Safety and Quality in Health Care (ACSQHC) state: “people are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:
- 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.” [2, p27]
However, the length of the period of end of life can still vary significantly. It may be years where an older person has a chronic or malignant disease, or very brief, where an older person suffers acute and unexpected illnesses or events, such as sepsis, stroke or trauma. [1,2]
End-of-life care ‘includes physical, spiritual, and psychosocial assessment, and care and treatment delivered by healthcare workers. It also includes support of families and carers and care of the person’s body after their death.’ [2, p27]
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How to recognise end of life in people living with dementia
Recognising end of life requires thorough clinical assessment using timely and appropriate tools, regular communication and a person-centred approach.
The use of routine, simple trigger tools can alert health care workers to undertake a holistic assessment and determine if a person with dementia will benefit from end-of-life care.
Tools to identify that an older person may be approaching the end of life
The surprise question is suggested as a simple trigger tool to use as the first step. Ask yourself of the older person:
- “Would you be surprised if the person died in the next 12 months?”
- “Would you be surprised if the person died in the next days or weeks?
If the answer is ‘no, I would not be surprised’ to either question then the person may be approaching the end of life.
The Supportive and Palliative Care Indicators Tool (SPICT) (pdf) is a screening tool often used in addition to the Surprise Question.
- The SPICT helps identify changes early in a person’s health and wellbeing and can be used to continually monitor a person’s condition. These include any general indicators of poor or worsening health, along with clinical signs of one or more life-limiting health conditions and increasing burden of illness. To identify that a person may need end-of-life care, at least one of the six general indicators and one of the clinical indicators would have a positive response.
- The SPICT 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 SPICT website for user guidelines and further information about this free tool, including:
- The SPICT-4ALL (pdf) is another SPICT version. The tool has easy to understand language. It is designed to be used by everyone including people with long-term illnesses, family and carers and the healthcare team. The SPICT-4ALL makes it easier to identify and discuss the signs that a person’s overall health may be declining. This ensures they receive the care they need in a timely manner. More information is available about this tool, including the how to use guide on the SPICT-4ALL web page.
- The Functional Assessment Staging Tool (FAST©) (pdf) helps to understand the progression of functional decline and disease severity for a person with dementia. It is a validated, reliable dementia staging scale that focuses on the moderate to late stages of dementia. The tool includes 16 items across 7 stages.
- The Australia-modified Karnofsky Performance Status (AKPS) (pdf) is a measure of the person’s overall performance status or ability to perform their activities of daily living.
- The AKPS measures performance across the dimensions of activity, work and self-care. An AKPS score of 100 signifies normal physical abilities with no evidence of disease. Decreasing numbers indicate a reduced ability to perform activities of daily living.
Remember, end-of-life care may also be required for a person with dementia that has an acute deterioration or medical emergency. Good clinical assessment and consultation with the person’s GP, and if needed, external experts, such as specialist palliative care is critical. Family and carers should also be contacted when a person is deteriorating. More information is provided in the Respond to Deterioration section of the ELDAC Dementia Toolkit.
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How to build knowledge, confidence and skills in ACP in recognising end of life in people with dementia
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- Watch the ELDAC Toolkit Educational Videos on how to recognise end of life in residential aged care or home care settings. The videos discuss the common signs of end of life and the use of end-of-life tools, such as the Surprise Question and the Supportive and Palliative Care Indicators Tool (SPICT).
- Review the SPICT user guidelines to learn more about:
- assessing people’s needs and planning care
- talking about future care planning
- starting conversations about changes in health and care planning.
- Gain a better understanding of the clinical indicators used in the SPICTTM:
- palliAGED offer information and resources to help understand comorbidity and multimorbidity.
- palliAGED has practice tips on frailty for Nurses (pdf) and Careworkers (pdf).
- Read the ELDAC Case Study on John on how to recognise when a person with dementia is nearing end of life.
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Information for families and carers
Dementia Australia
This webpage provides information about the symptoms of late-stage dementia.
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References
- Australian Government Aged Care Quality and Safety Commission. Draft Glossary of Terms: Guidance material for the strengthened Aged Care Quality Standards for review and discussion (863kb pdf). 6 Feb 2024 [cited 15 Dec 2025].
- Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential elements for safe and high-quality end-of-life care (1MB pdf). Sydney: ACSQHC. 2023. [cited 5 Nov 2025].
Page updated 23 September 2026
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