End of life care

4. Recognising when someone is reaching the end of their life

It is important to know when a person with dementia is nearing the end of their life because it can help in giving them the right care. However it can be difficult to know when this time is. This uncertainty can have a big impact on how the person’s family feel, and may also affect how they feel themselves. There are symptoms in the later stages of dementia that can suggest 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
  • eating less and having difficulties swallowing
  • bowel and bladder incontinence
  • being unable to walk or stand, problems sitting up and controlling the head, and becoming bed-bound.

It is likely that a person with dementia is nearing the end of their life if they have these symptoms, along with other problems such as frailty, infections that keep coming back, and pressure ulcers (bedsores). For more information about pressure ulcers see factsheet 512, Pressure ulcers (bedsores).

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 an irregular breathing pattern
  • have cold hands and feet.

These changes are part of the dying process. Healthcare professionals can explain these changes so you understand what is happening. The person is often unaware of what is happening, and they should not be in pain or distress. Medication can be used to treat the person’s symptoms. If the person can’t swallow, there are other ways of providing this, such as medication patches on the skin, small injections or syringe drivers (devices that provide a continuous flow of medication under the person’s skin). Speak to a GP or another health professional about this.