Respond to Deterioration

Responding to deterioration in people with dementia ensures:

Signs of deterioration are identified early and addressed.
Timely management of symptoms.
Complications may be prevented.

What does deterioration in people with dementia look like?

Deterioration refers to signs that the health of the person with dementia is declining. In late dementia, symptoms significantly worsen, impacting memory, communication, and physical abilities. Recognising deterioration can be challenging due to the gradual progression of the disease. This can sometimes make it difficult to identify when palliative care is needed.

Typical Illness Trajectories

People will experience different illness trajectories depending on the primary diagnosis and presence of other diseases (co-morbidities). Three typical illness trajectories for people with progressive chronic illness are described and illustrated in the figure below. [1, 2]

Trajectory 1: Cancer (short decline)

For these individuals there is a steady progression with a slight decline in physical health over months to years. Evident decline occurs in the end-of-life phase, which includes increasing symptoms, rapid decline in weight and functional status in the last weeks or months of life. [1, 2]

Typical illness trajectories and palliative care phases towards the end of life

Reproduced with permission from: The Royal Australian College of General Practitioners. RACGP aged care clinical guide (Silver Book). 5th edition. East Melbourne, Vic: RACGP, 2019, 2020. Available at www.racgp.org.au/silverbook

How to respond to deterioration in people with dementia
Ask a family member or carer if there has been a change in the person’s condition.

The person in late-stage dementia may:

lose recognition of familiar people

gradually lose the ability to perform daily tasks

experience incontinence

be affected by other conditions like stroke or arthritis

struggle to understand conversations and surroundings

lose the ability to talk

call out occasionally

forget how to eat or drink, and have trouble swallowing

experience weight loss

become bed or chairfast. [4]

Despite these challenges, the person with dementia can continue to show emotions and sensory experiences.

For people with dementia, it is necessary to identify and respond appropriately to deterioration, which may be from their primary diagnosis or because of other disease or events.

It is important to distinguish between deterioration that is due to treatable versus untreatable causes. Treatable causes are situations such as an acute or medical emergency that may warrant review and treatment. For instance, a urinary tract infection can be treated. Untreatable or irreversible causes could be due to disease progression.

Good clinical assessment and consultation with other team members (e.g. GP, Nurse Practitioner, Neurologist, Psychogeriatrician) is critical. If needed, external experts, such as specialist palliative care or dementia advisory services should be contacted for assistance. Family and carers should also be contacted when a person is deteriorating.

A sudden deterioration, such as acute confusion, may indicate delirium characterised by inattention and disturbance in cognition that develops over a short period of time and tends to fluctuate. Delirium is potentially preventable and treatable. However, major barriers, including under-recognition, are an issue. [5] It is advised to use a recognised tool, such as the 4AT.

The Supportive and Palliative Care Indicators Tool (SPICT) (pdf)or SPICT-4ALL (pdf) can be used during routine care evaluations and following an unplanned hospitalisation. It may indicate a change in an older person’s condition that warrants a review of care needs.

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.

The Stop and Watch Early Warning Tool (pdf) can be used by care workers to spot signs of deterioration in people. The tool can be used in situations of increased concerns when team members notice that something isn’t quite right.

Other clinical tools are available for symptom assessment in the section on Assess Palliative Care Needs of the ELDAC Dementia Toolkit.
How to build knowledge, confidence and skills in responding to deterioration for people with dementia
- - Watch the ELDAC educational videos on Manage Dying for Residential Aged Care or Home Care, which also discuss how to respond to a person who is declining in health.
  - Review the ELDAC Residential Aged Care and Home Care Toolkits for other setting-specific guidance on responding to deterioration.
  - See the ELDAC Case Study on John on how to respond when a person with dementia is in decline.
  - palliAGED has information on recognising deterioration. While not dementia specific there is an online learning module and video that may be useful.
  - Explore the other information offered by palliAGED on how to support families through a person’s decline, with Practice Tips for Nurses and Careworkers.
Information for families and carers

Later stages and end of life

Dementia Australia

This webpage provides information about the symptoms of late-stage dementia.

How do I know if someone with dementia is dying?

Dementia Support Australia

This webpage discusses the challenge in identifying when changed behaviours may be a sign that a person is approaching the end of their life.

References
1. The Royal Australian College of General Practitioners (RACGP). RACGP Aged Care Clinical Guide (Silver Book): Part A. Palliative and End-of-Life Care. Melbourne, VIC (AU): RACGP, 2019 (last revised Apr 2025), 5th edition. [cited 6 Nov 2025].
2. Murray SA, Kendall M, Boyd K, Sheikh A. Illness Trajectories and Palliative Care. British Medical Journal 2005. 330(7498):1007–1011. DOI: 10.1136/bmj.330.7498.1007. [6 Nov 2025].
3. Rogers N, Steptoe A, Cadar D. Frailty is an independent predictor of incident dementia: Evidence from the English Longitudinal Study of Ageing. Science Reports. 2017; Nov 16;7(1):15746. DOI 10.1038/s41598-017-16104-y. [cited 6 Nov 2025]
4. Dementia Australia. Later stages and end of life. 2024. [cited 6 Nov 2025].
5. Queensland University of Technology (QUT) and Alzheimer’s Australia Dementia Research Foundation. The ED Dementia Care Training Program: Providing best care to older people with dementia in emergency departments (pdf) 2017. [cited 6 Nov 2025].

Respond to Deterioration

What does deterioration in people with dementia look like?

Typical Illness Trajectories

How to respond to deterioration in people with dementia

How to build knowledge, confidence and skills in responding to deterioration for people with dementia

Information for families and carers

References