End of life care

4. Recognising when someone is reaching the end of life

Telling when a person with dementia is nearing the end of their life is difficult but very important, because it can help in giving the person the right care. This uncertainty can have a huge emotional impact on the family and possibly the person with dementia.

There are symptoms of later-stage dementia that can signal that the person is reaching the final stage of their illness. These include: 

  • speech limited to single words or phrases that may not make sense
  • needing help with most everyday activities
  • reduced eating and difficulties swallowing
  • bowel and bladder incontinence
  • inability to walk or stand, problems sitting up and controlling the head, and becoming bed-bound.

When these symptoms are combined with complications such as frailty, recurrent infections or pressure ulcers (bed sores), it is likely the person is nearing the end of life. Intrusive medical procedures such as resuscitation are now unlikely to be in the person's interests.

As someone's condition worsens and they get to within a few days or hours of dying, further changes are common. The person will often: 

  • deteriorate more quickly than before
  • lose consciousness
  • be unable to swallow
  • become agitated or restless
  • develop a characteristic irregular breathing pattern
  • have cold hands and feet.

Healthcare professionals can explain these changes so you understand what is happening. By this stage the person is 'actively dying', but they are often unaware and should not be suffering. Medication can be used to treat any symptoms that may arise.