Understanding dying

Dementia is a progressive condition, and everyone with the diagnosis will die with or from it. Understanding the changes that happen in the last days can help you feel more prepared for what to expect

The last days of life

Everyone experiences dying in their own way, with their own individual needs. However, certain changes commonly occur as someone approaches the end of life, which can alert you to the fact that they are nearing death.  

These include: 

  • reduced need for food and drink 
  • withdrawing from the world and becoming increasingly sleepy 
  • changes in breathing 
Reduced need for food and drink

When someone is dying, their body no longer has the same need for food and drink. Their metabolism slows down, and they become less able to digest food or absorb the nutrients from it.  

This can be hard to acceptand you may feel you should persevere with encouraging the person to eat and drink, but these changes are a natural part of dying. 

Mouth care can help the person feel more comfortable if their mouth is dry. You might try: 

  • wetting their lips with a damp sponge 
  • applying lip balm 
  • offering small sips of fluid, if they are able to swallow and willing to take it 
Withdrawing from the world and becoming increasingly sleepy

The process of ‘withdrawal from the world’ tends to be gradual. People often seem calm and peaceful when they are awake, but show less interest in what is going on around them 

As they near death, they usually become increasingly sleepy. Most people eventually slip into unconsciousness and die peacefully and quietly in their sleep. 

To bring the person comfort: 

  • simply spend time with them 
  • touch their arm or hold their hand 
  • speak to them – even if they don’t respond, they may recognise your voice and be soothed by it  
Changes in breathing

Breathing can slow down and become shallower as the body becomes less activePeople may also develop an irregular breathing pattern or a noisy rattle to their breathing. This is caused a buildup of mucus in the chest, which they are unable to cough up. 

In the final stages, breathing pattern may change again, with long pauses between breaths. Also, the abdomen may rise and fall instead of the chest. 

If you’ve experienced breathlessness yourself, you may be worried that the person is frightened and fighting for breath, but it is not thought that breathing changes at the end of life cause distress. 

  • Just sitting quietly and holding the person’s hand can make a real
    difference. Don’t worry if you are not actively doing anything: your presence alone will bring comfort 
  • Changing the person’s position may help with rattling breathing 
  • Medication which breaks up the mucus could be appropriate – see the section on medication below for more information 
Other changes that might occur

Occasionally, people become more agitated as death approaches. If this happens, healthcare professionals can give medication to help control pain and other symptoms.  

The person’s skin may become pale, moist and slightly cool prior to death. You may see changes in the colour of their hands, feet, fingernails and toenails as the body becomes less able to circulate blood. 

Medication

Some people may be given ‘anticipatory medications’ by health or care professionals. These are used to make them more comfortable, and include medication to relieve pain, soothe anxiety, reduce nausea or sickness, and ease the noisy breathing caused by excess mucus. 

Sedation may also be given to reduce any distress. 

When people need to have medication frequentlythey may be given a syringe driverA small needle is inserted under the skin, and a measured, continual dose of medication is delivered by a battery-operated pump 

A syringe driver will be managed by a nurse, and reduces the need for repeated injections. 

Support for you

When someone you are close is approaching the end of life and eventually dies, it’s natural to need time and support.  

If the person is in a hospital or care home, staff should be able to keep you updated on their condition, advise you of any practicalities that might make things less stressful – such as an exemption from hospital car parking charges if you are visiting for long periods – and contact you when they feel death is imminent and you should be with them. 

If they are at home, a District Nurse, Hospice Nurse or GP may be able to explain what is happening and offer you support themselves or point you towards support groups in your area. 

To speak to a dementia specialist Admiral Nurse about any aspect of dementia, including understanding dying and coping with bereavement, call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org. 

You may also find these sources of support  helpful: 

Dementia UK leaflet on grief, bereavement and loss: dementiauk.org/grief-bereavement-and-loss-in-dementia 

Dementia UK leaflet on recognising the later stages of dementia and moving towards end of life care: dementiauk.org/get-support/understanding-changes-in-behaviour/end-of-life-care/ 

Dementia UK leaflet on eating and drinking: dementiauk.org/get-support/maintaining-health-in-dementia/eating-and-drinking/ 

Cruse Bereavement Support
0808 808 1677
cruse.org.uk   

Grief Encounter: supporting bereaved children and young people
0808 802 0111
griefencounter.org.uk 

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