This section reviews resources to assist you in recognising that someone is imminently dying and to provide support for the person with dementia and their families.
Common causes of death for people with dementia include pneumonia, cardiovascular disease, and sudden unexplained deaths. Cancer is reported less frequently. 21
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. 22 These include:
- Profound weakness
- Reduced intake of food and fluids
- Drowsy or reduced awareness
- Gaunt appearance
- Difficulty swallowing
- Needing assistance with all care
- Disorientation to time or place
- Agitated or restless
- Difficulty concentrating. 22
Recognising when a person with advanced dementia is dying may be more difficult than someone without dementia as they may have some of the above signs and symptoms of dying for months or even years. As a guide if these symptoms become much worse 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. 22 The person may also experience terminal restlessness.
Good end of life care is holistic care in meeting the person’s physical, psychological, spiritual and social needs. Refer to the information in the provide palliative care section of the Dementia Toolkit for resources on meeting these individual needs. Frequency of comfort interventions in the last few weeks or days may be required.
Other ELDAC Resources
Other general information on manage dying in specific care settings is available in the ELDAC Toolkits for Residential Aged Care and Home Care.
ELDAC Toolkit Educational Videos
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 video for Residential Aged Care also includes implementing the Residential EOL Care Pathway and the Home Care video has specific information on support and care for the person dying at home.
End of Life Medications
Assessment and management of symptoms is critical for dying clients or residents. CareSearch has information on prescribing medications for managing common end of life symptoms. Deprescribing or stopping medicines should also be considered by the person’s General Practitioner.
After the Person Has Died
There are legal regulations and laws concerning death certification and coronial procedures. Death is to be verified and depending on which state or territory you are in this may be done by a nurse or doctor. Certification of death must occur which is usually by the General Practitioner. In some instance’s deaths must be reported to the coroner.
palliAGED has a downloadable Practice Tip on After-Death Choices for Nurses (pdf 220kb) and Careworkers (pdf 442kb).
CarerHelp is a website that provides information for carers of people who are at the end of their life. The information is in Carer Pathways. Pathway 4 is about caring when the person is dying. It is not dementia specific, but has useful information for carers. This includes:
- Videos on the dying process and what to do when someone dies
- Caring for the dying person
- Being present when the person is dying
- A learning module for carers – Preparing for dying.
CarerHelp also has resources for carers within specific population groups.
The Carer Gateway funded by the Australian Government supports carers and has information on accessing respite.