Support for carers, family and close friends at end of life

As a carer, friend or family member, it can be challenging when a person with dementia is approaching the end of their life.

Most people find it difficult to come to terms with the person with dementia approaching the end of life. Many carers say they are grieving over time while the person is alive and as the dementia progresses. This may be because of the dementia progressing over a long period of time, and the changes that they are seeing in the person.

You should tell health and social care professionals about your own wishes, including the need to say goodbye to the person and whether you want to be with them at the end of their life, if this is possible.

Caring for someone at the end of life can be a rewarding experience and a time of great closeness. Carers who have supported the person through dying and death often value this as an important memory.

After the person has died

As a carer, you will experience and approach bereavement in your own way and it is important that you are supported to grieve as you need and want to. You may experience a range of emotions, including:

  • numbness
  • finding it difficult to accept the situation
  • anger
  • regret
  • sadness
  • relief
  • feeling isolated
  • loss of purpose.

You may feel very strong emotions, or you may feel that you have no strong emotions left. Sometimes, other people may assume that you have already grieved for the person with dementia as their condition has worsened. Whether or not this is something you’ve felt, many people will still feel grief when the person dies.

The period around the funeral is often a time when others offer most support. Afterwards you may need time to adjust to no longer caring for the person (this is sometimes called a ‘delayed bereavement’). You may need to rebuild friendships that your caring role put on hold. You may continue to need emotional support during this time, but you may find that fewer people offer it.

Talking through feelings with family and close friends can often provide comfort, so try to tell people when you feel you need this support. If you need more support or are becoming depressed (which is different from grieving), ask your GP about local bereavement services or contact Cruse Bereavement Care. Your local carers’ centre may also be able to help.

Coping with grief, loss and bereavement

When the time comes, it may help to read our tips on coping with the loss of the person with dementia. 

Read more

What to do after the person has died

There are practical issues to think about after a person dies. Though you may find it difficult, it is important to think about the following:

  • registering the death
  • funeral plans
  • changes to financial and legal documents and benefits.

You can find out more from your local Citizens Advice.

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