Manage Dying

The last days of life are the hours, days or, occasionally, weeks when a person’s death is imminent. This is sometimes referred to as the period when a person is actively dying. The need to recognise signs of imminent death and manage dying effectively is a key aspect of delivering palliative and end-of-life care. [1]

People living with dementia may die of dementia or from another condition while also having dementia. Common causes of death for people with dementia include pneumonia, cardiovascular disease, and sudden unexplained deaths. Cancer is reported less frequently. [2]

Providing responsive care that aligns with the preferences of the person with dementia is essential to address distress and discomfort for the person and support the wellbeing of their family, substitute decision makers, and carers.

How to manage dying in people with dementia
Good end-of-life care is holistic care in meeting the person’s physical, psychological, spiritual and social needs. Frequent comfort interventions in the last few weeks or days may be required. To manage dying responsively and effectively, clinicians and care workers should consider these important points:
While individuals may differ in their signs and symptoms of dying there are some common indicators that a person may be in the final days of life. These include:

profound weakness

reduced intake of food and fluids

drowsy or reduced awareness

gaunt appearance

difficulty swallowing

bed-bound

needing assistance with all care

disorientation to time or place

agitated or restless

difficulty concentrating. [3]

Recognising when a person with late dementia is dying may be more difficult than with a person without dementia, as the person may present with signs and symptoms of dying for months or even years. As a guide, where these signs and symptoms worsen over a period of two or three weeks, or days or hours, it may indicate the person is dying. In particular, the person may experience further changes, such as losing consciousness, no longer being able to swallow, and changes in breathing patterns. [4] The person may also experience terminal agitation.

Decisions to withhold and withdraw life-sustaining medical treatment are common in palliative and end-of-life care. Life-sustaining treatment refers to medical interventions necessary to prolong a person’s life. These can include cardiopulmonary resuscitation, artificial hydration and nutrition, artificial ventilation, and sometimes antibiotics and blood transfusions. [5]

A person with dementia who has capacity can refuse treatment, even if it will cause their death. It is lawful for a health professional to withhold or withdraw treatment in this case.

If the person does not have capacity, it will still be lawful in some cases for treatment to be stopped or not provided. Examples are:

when the person has a valid Advance Care Directive which refuses that treatment

consent was given by the person’s substitute decision-maker to withhold or withdraw treatment or

if providing treatment would be non-beneficial to the person.

The ELDAC End of Life Law Toolkit has further information on the law and Withholding and Withdrawing Life Sustaining Medical Treatment.

Maintaining nutrition and hydration is a common clinical issue for people with dementia, particularly when a person approaches end of life where goals around eating and drinking change. [6]

Reduced food intake and appetite is a natural part of the dying process. Appetite may reduce and refusal of food and fluids occur. Goals are focused on promoting comfort and quality of life.

Small amounts of suitable and favourite food and drinks are recommended as tolerated. Where swallowing is diminished and the person is requesting food or drink, offer ‘tasting for pleasure’ ensuring safety where dietary or swallowing difficulties are present. [7] Tasting favourite foods can bring joy and comfort. Using a mouth sponge or soft toothbrush dipped in their favourite flavour (for example ice cream, favourite drinks) applied sparingly to their lips and/or tongue so they can taste the flavour may be desirable.

Physiological changes and immobility affecting skin and soft tissue can occur during the dying stage. Risk factors, signs and symptoms associated with skin changes at the end of life include:

loss of appetite

weight loss

cachexia

low haemoglobin, and

dehydration.

These changes can impact the skin and soft tissues leading to breakdown and pain. [8, 9] For people with dementia there may be a prolonged period of being bed-fast that can compromise skin integrity.

Ways to optimise skin integrity can include:

Regular assessment with a pressure ulcer risk assessment tool, such as the Braden Pressure Ulcer Risk Assessment (958kb pdf).

Pressure-relieving equipment can prevent shearing. Pressure relieving mattresses can be used, but the person must be repositioned every 2 hours. Other equipment may include heel protectors or two slide sheets.

Development of an appropriate continence management program including the use of Ph neutral skin cleansers, skin emollients or barrier products and gentle hygiene techniques.

palliAGED has Practice Tips on Skin and Wound Care for Nurses (pdf) and Careworker (pdf).

Oral care must be provided regularly and as tolerated by the person. Regular oral care keeps the mouth, teeth, gums and lips clean, moist and comfortable.

Use a soft toothbrush or oral sponge with low foaming toothpaste or other products, and a small amount of water.

Keep the lips moist using a water-based lip balm. Moisten the mouth with oral spray. Assess the mouth for any changes. Ensure that dentures and partial plates are risk assessed for choking, removed and cleaned thoroughly.

palliAGED has a short video on how to provide mouth care. For more in-depth information see the video from the NHS Carrying Out Mouth Care EOL.

Towards the end of life, people may have dry eyes and excessive eye secretions. Both are common and can cause discomfort.

palliAGED has Practice Tips for Nurses and Careworkers on eye care.

caring@home provides a tips sheet on how to care for the eyes (pdf) and a short video.

To manage urinary and/or bladder continence develop a continence management program. This includes the use of pH neutral skin cleansers, skin emollients or barrier products, and gentle hygiene techniques.

Consider indwelling catheter for urinary retention if identified, or to prevent pain and excoriation from incontinence.

Marie Curie has information on continence management in palliative care.

Constipation is a common symptom at the end of life often due to medications, reduced mobility and reduced appetite.

palliAGED has Practice Tips on constipation for Nurses (393kb) and Careworkers (433kb).

The risk of delirium increases in the last weeks or days of life. [10] Recognise and respond to signs of delirium by using the 4AT screening tool.

For information about responding to delirium, see the ACSQHC Delirium Clinical Care Standard (revised 2021).

There are legal regulations and laws concerning death certification and coronial procedures. [11]

Death is to be verified. This may be done by a nurse or doctor depending on state or territory.

Certification of death must occur, which is usually by the General Practitioner. In some instances, deaths must be reported to the coroner.

Family should be supported regarding immediate wishes (e.g. viewing the person) and clarification of funeral plans.

Care of the person’s body should be undertaken in a sensitive and dignified manner. This may involve family participation, cultural and religious practices.

Supporting bereavement of the family and others is an element of after-death care.

palliAGED has Practice Tips on After-Death Choices for Nurses (pdf) and Careworkers (pdf).

Refer to the information in the Provide Palliative Care section of the ELDAC Dementia Toolkit for resources on meeting these individual needs. For additional information see the Manage Dying sections of the ELDAC Toolkits below.

Residential Aged Care

Home Care.

Resources include talking to families about dying, and setting-specific resources like using the Residential Aged Care End-of-Life Care Pathway (RAC EoLCP) from Queensland Health.
The specific role of clinicians

Holistic assessment and management of symptoms is critical for people in the last days and weeks of life.

Symptom management often involves a combination of approaches, including medications and non-medical approaches. Key principles to consider are the cause of symptoms, treatment benefits and burdens, the person’s illness stage, overall care goals, and their preferences and values.

It is essential to provide opportunities for the person and their family and carers to talk about what is happening. This includes talking about aspects of care, such as requesting or declining treatment. These discussions can support understanding and offer space for people to express concerns. In some instances, consultation with a specialist palliative care service may be required.

In addition to the issues above, clinicians need to be informed about:
Assessment and management of symptoms is essential when a person with dementia is dying. This may include medications to support management of symptoms including pain, anxiety, emotional distress, terminal agitation, delirium, excessive respiratory secretions (prophylactic), nausea, vomiting, and dyspnoea (breathlessness). [12]
Prescribing information for managing common end of life symptoms (GPs and NPs) includes:

Anticipatory prescribing of as needed medications for common symptoms that may occur at some stage when the person with dementia is dying.

Prescribing for prn (pro re nata or as needed) medication for emergent symptoms.

Ongoing medication management for pre-existing symptoms. [13]

caring@home offers the palliMEDS app. It provides clinicians with prescription information for the most useful palliative care medicines in the management of terminal symptoms. The app also includes an opioid calculator tool.

CareSearch has information on prescribing medications for managing common end-of-life symptoms.

It is also important to consider reducing and/or ceasing medications that are no longer indicated or clinically appropriate, may cause harm and no longer fit with the current goals of care. [13] The RACGP aged care clinical guide offers more information about deprescribing or stopping medicines.

Syringe drivers are commonly used for symptom management. They provide continuous medications subcutaneously when a person is no longer able to swallow. [4]

CareSearch has more information and resources about syringe drivers.

palliAGED also has information on syringe drivers.
How to build knowledge, confidence and skills in managing dying and dementia care
- - Watch the ELDAC Toolkit Educational Videos on Manage Dying that will help with recognising a person’s deteriorating health; understanding the benefits of open communication and ’talking about dying’; and identifying the changes that show death is near. The Residential Aged Care video also includes implementing the Residential Aged Care End of Life Care Pathway (RAC EoLCP) by Queensland Health. The Home Care version of the video has specific information on support and care for the person dying at home.
  - Read the ELDAC Case Study on John on how to care for a person with dementia who is dying. Use reflective practice to evaluate your experiences and identify areas for improvement. Discuss challenging cases with colleagues to gain insights and build confidence.
  - Watch the palliAGED short videos on various aspects of managing dying and end-of-life care. There is a video on recognising the signs of dying.
  - The Agency of Clinical Innovation has a clip on medications at the end of life. This covers medications that may be needed in the last days of life and how these can be delivered, such as via syringe drivers.
  - The Advance Project^® has developed resources and training specifically on dementia. This includes e-Learning designed for registered and enrolled nurses, allied health staff, manager and care coordinators working across care settings. There are 9 modules in the course that will take about 4 hours to complete. While the course is free you need to enrol.
Information for families and carers
Later Stages and End of Life

Dementia Australia

This webpage has information on the dying process.
National Dementia Helpline

Dementia Australia

The helpline (Ph: 1800 100 500) is free and available 24 hours every day. It offers:

confidential support and guidance

navigation of services and programs

information and advice

lists other ways to contact Dementia Australia.

References
1. Australian Government Department of Health, Disability and Aging. Strengthened Aged Care Quality Standards. Aug 2025 [cited 5 Nov 2025].
2. Eisenmann Y, Golla H, Schmidt H, Voltz R, Perrar KM. Palliative Care in Advanced Dementia. Frontiers in Psychiatry. 2020; 11:699. DOI: 10.3389/fpsyt.2020.00699 [cited 5 Nov 2025].
3. CareSearch. The dying patient. 22 July 2025. [cited 6 Nov 2025].
4. NHS Inform. What happens when someone is dying. 28 May 2025. [cited 6 Nov 2025].
5. ELDAC End of Life Law Toolkit. Factsheet: Withholding and Withdrawing Life-Sustaining Medical Treatment. 27 Aug 2024. [cited 6 Nov 2025].
6. Volkert D, Beck AM, Faxén-Irving G, Frühwald T, Hooper L, Keller H, et al. ESPEN guideline on nutrition and hydration in dementia – Update 2024. Clinical Nutrition. 2024; 43(6):1599-626. DOI: 10.1016/j.clnu.2024.04.039. [cited 6 Nov 2025].
7. ELDAC Allied Health Toolkit. Eating and Drinking with Acknowledged Risk (EDAR). 13 June 2025. [cited 6 Nov 2025].
8. Ellershaw J, Wilkinson S. Care of the dying: A pathway to excellence. Oxford (UK): Oxford University Press, 2011, 2nd edition. [cited 6 Nov 2025].
9. National Institute for Health and Care Excellence (NICE). Pressure ulcers: Prevention and management. [CG179] UK: NICE; 2014 (updated Feb 2019). ISBN: 978-1-4731-0525-6. [cited 6 Nov 2025].
10. Agar MR. Delirium at the end of life. Age and Ageing. May 2020; 49(3):337–340. DOI: 10.1093/ageing/afz171. [cited 6 Nov 2025].
11. CareSearch. Verification and certification of a death. 5 Oct 2023 [cited 6 Nov 2025].
12. National Institute for Health and Care Excellence (NICE). Care of Dying Adults in the Last Days of Life: Pharmacological Interventions. NICE Guideline, No. 31. UK: NICE; 2015. [cited 6 Nov 2025].
13. The Royal Australian College of General Practitioners (RACGP). RACGP Aged Care Clinical Guide (Silver Book): Part A. Deprescribing. Melbourne, VIC (AU): RACGP, Last revised 30 Oct 2019. [cited 6 Nov 2025].
14. Queensland Health. Management of Subcutaneous Infusions in Palliative Care. Queensland Government. 29 Oct 2025. [cited 5 Nov 2025].

How to manage dying in people with dementia

The specific role of clinicians

How to build knowledge, confidence and skills in managing dying and dementia care

Information for families and carers

References