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.

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 about pressure ulcers see our information on 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.

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