End of life care

3. Dementia as a life-limiting illness

Dementia is a life-limiting illness, but it is very difficult to know how long someone with dementia will live for.

If a person also has another life-limiting illness (such as cancer), it is often easier to know how quickly their condition will get worse. A person may die from another condition at any stage of having dementia. Someone in the later stages of dementia who does not have another life-limiting illness gets worse slowly over many months. They gradually:

  • become more frail
  • have more frequent falls or infections
  • become less mobile
  • sleep more
  • eat and talk less.

A person in the later stages of dementia may have symptoms that suggest that they are close to death, but actually live with these symptoms for many months. This uncertainty makes it very difficult to plan and put things in place for the end of someone’s life.

For someone in the later stages of dementia, the most common immediate cause of their death is an infection such as pneumonia. At this point, the person is likely to be much frailer and have a weaker immune system, so is at greater risk of developing infections, which can last for a long time. There are changes that are likely to happen when the person is within a few days or hours of dying (see ‘Recognising when someone is reaching the end of their life’ below). Some of these changes may be distressing, but health and social care professionals can reassure you that the person is not suffering.