End of life care

2. Palliative and end of life care

Palliative care is for anyone diagnosed with a life-limiting illness, including dementia. It focuses on maintaining a person’s quality of life by relieving discomfort or distress (whatever the cause). Someone can receive palliative care for several years and it may be offered alongside other treatments, especially in the earlier stages of dementia. Any palliative care in place will continue alongside end of life care.

End of life care aims to support someone in the later stages of a life-limiting condition to live as well as possible until they die. It also aims to support family and carers during this time and after the person dies. End of life care may last for weeks, months or occasionally years – it is often difficult to know exactly when a person with dementia is approaching the end of their life.

End of life care should support the person to live as well as possible until they die. It supports all aspects of their wellbeing, especially:

  • their physical needs (including pain relief and management of other symptoms)
  • how they are feeling
  • their relationships with others
  • their spiritual beliefs and needs.

For many people a ‘good death’ means:

  • being treated with compassion and respect
  • being kept clean, comfortable and free from distressing symptoms
  • being in a familiar place surrounded by those close to them.

End of life care for a person with dementia can involve a number of different professionals working together, including the GP, community nurses, social workers or care home staff. Palliative care professionals at a local hospice or hospital may give specialist input if this is needed. This team of professionals should keep you updated as the person’s condition changes and involve you in any decisions.

The person should always have an up-to-date care plan that includes end of life plans and is shared with those involved in the person’s care. Some areas have special staff who co-ordinate end of life care for people with dementia. Ask the GP, community nurse or local hospice (if you have one) about what is available in your area.