End of life care

12. Support for carers, family and close friends

Most people find it difficult to come to terms with the approaching death of the person with dementia. Many carers talk of a progressive grieving while the person is alive and the dementia advances. This grieving may reflect the often long duration of the disease and the changes to the person which inevitably occur.

You should tell staff about your own wishes, including the need to say goodbye to the person and whether you want to be with them at the end 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 helped the person to have a good death often hold this memory (that they were able to support the person right up to the end) particularly close.