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.
Everyone experiences dying in their own way, with their own individualneeds. However, certain changes commonly occur as someone approaches the end of life, which can alert you to the fact that they are nearing death.
reduced need for food and drink
withdrawing from the world and becoming increasingly sleepy
Breathing can slow down and become shallower as the body becomes less active. People may also develop an irregular breathing pattern or a noisy rattle to their breathing. This is caused a build–up 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
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.
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 frequently, they may be given a syringe driver. A 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.
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 youshould 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, callour free Helpline on 0800 888 6678(Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email firstname.lastname@example.org.
You may also find these sources of support helpful: