End of life care for a person with dementia

 While it may be upsetting to think about, having important conversations with the person with dementia, and planning ahead, can mean they have a better experience at the end of their life.

Our dementia advisers are here for you.

Planning for end of life care

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. However there are things you can do to support the person and other close family or friends.

Around this time you will probably be dealing with a range of different health and social care professionals. It will really help if there is good communication between all of the people involved in providing the person’s end of life care.

Why is planning for end of life important?

You may find it hard to think or talk about end of life and it may be upsetting to read some of this information. But having these important conversations with the person, and planning ahead, can mean they have a better experience at the end of their life. It can also be helpful for you and for others close to the person.

Planning for the end of life is important for anyone who has a life-limiting condition. For a person with dementia, it’s important to try and have these conversations early, while it’s still possible to make shared decisions. However, many people don’t feel ready to think ahead about dying. In this case, knowing the person’s values, wishes and beliefs more generally can help when decisions need to be made on their behalf.

Advance care planning

Read more about making choices about future care (known as ‘advance care planning’), including information about lasting power or attorney and advance decisions. 

Lasting power of attorney Advance decisions

Palliative and end of life care

What is 'palliative care'?

Palliative care is for anyone diagnosed with a life-limiting condition, including dementia. It focuses on making a person’s quality of life as good as possible by relieving discomfort or distress.

A person can receive palliative care for any length of time, from a few days to several years.

Palliative care may be offered alongside other medical care, 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 a person in the later stages of a life-limiting condition to live as well as possible until they die.

It aims to enable the person to die in the way that they would have wanted, giving priority to the things that matter most to them. It also supports family and carers during the final stages, as well as after the person has died.

End of life care can last for just a few days or weeks, but for many people it may continue for months or even years.

How should end of life care support a person with dementia?

End of life care should support the person to live as well as possible until they die, especially:

  • their physical needs, including pain relief and management of other symptoms
  • their emotional needs, including managing distress
  • their relationships with others, including who they would and wouldn’t like to be with them
  • their environmental needs, such as their surroundings and community
  • their cultural, spiritual or religious beliefs and practices.

Everyone supporting the person (including care professionals) should use their knowledge of the person, and any advance care planning the person has put in place.

For many people, ‘dying well’ 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.

Doing small things for the person can help a lot – for example talking to them, brushing their hair or holding their hand. Meaningful connections like this can help you be close to the person and give them the emotional support they need.

What professionals are involved in end of life care for a person with dementia?

End of life care for a person with dementia can involve a number of different professionals working together as a team. This can include:

  • the GP
  • community nurses
  • social workers
  • care home or hospital staff.

Specialist palliative care professionals may also provide input for people with complex needs.

How should professionals manage end of life care?

Health professionals should normally carry out a risk assessment to identify things that could worsen the person’s quality of life during this time. They should also keep you updated as the person’s condition changes and involve you in any decisions. If you are unable to meet with them in person, this should still happen over the phone.

There should also be an up-to-date care plan for the person. This plan should include end of life plans and should be shared with those involved in the person’s care.

Some local 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 the person’s area.

The person’s spiritual needs, practices and traditions will be individual to them. These needs should be addressed and respected as much as the medical aspects of care. Personal or religious objects, symbols or rituals (including prayer or readings) may provide comfort, both for the person and those close to them. These could also include music, pictures, smells or tastes.

How might coronavirus restrictions affect end of life care?

It’s important to note that, if there are restrictions in place due to coronavirus, this can affect care home and hospital visiting.

Not being able to see loved ones can be extremely difficult, especially if the person is nearing the end of their life.

Speak to staff about how they can support you and the person at this time. For example, they may be able to allow limited visits with safety measures in place. It is likely that any restrictions that are in place will allow for limited visiting when a person is at the end of life.

End of life care while in a care home during coronavirus

Some people with dementia in a care home who fall very seriously ill with coronavirus will receive palliative care, most commonly used at the end of a person’s life.

Read more
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