End of life care
This page explains what happens when someone in the later stages of dementia is nearing the end of life, and when they die.
- You are here: End of life care
- Dementia as a life-limiting illness
- Recognising when someone is reaching the end of their life
- End of life care and communication
- End of life care and physical needs
- Making decisions about end of life care
- Psychological, cultural, religious and spiritual needs
- Place of death
- Support for carers, family and close friends at end of life
- End of life care - other resources
End of life care
Planning for the end of life
When a person with dementia is approaching the end of their life, it can be a very difficult time for them and the people around them.
You might not want to think or talk about many of these things. You might find reading this upsetting. But having these difficult conversations with the person, and planning ahead, can ensure the person’s needs are met at the end of their life. It will also help if health and social care professionals communicate well now, with you and with each other.
Planning for the end of life is important for anyone who has a life-limiting condition. For a person with dementia, it is important to try and have these conversations as early as possible, while they can make decisions for themselves.
If they don’t feel ready to think about the future at this time, getting to know their values, wishes and beliefs more generally can help in the future when decisions need to be made on their behalf.
Palliative and end of life care
What is 'palliative 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.
What is '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.
Professional staff involved with end of life care
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.