Coming to terms with the death of a loved one can be very difficult, as it can stir up a whole range of complicated feelings.  People often move between denial, anger, grief and confusion before acceptance is reached.

How does bereavement affect people with learning disabilities?

In the past, it was common for people with learning disabilities not to be told much about the death of a family member or friend and not to be involved in the funeral or the mourning process, as families were afraid that the news might frighten them and that they would struggle to understand it.  

This is no longer the case, as most people now agree that hiding this information from someone with a learning disability is neither useful, healthy, nor a mark of respect.

One of the most important things we can do to help people deal with bereavement is to allow them to prepare themselves by building awareness and understanding of death and the implications it has for the future.  

Talking about death and loss is crucial to the grieving process, and will lead more quickly and effectively to understanding and acceptance.

As part of our Thinking Ahead project, people with learning disabilities told us the following:

‘We need to hear about people being ill and people dying so that we learn how to cope – if we haven’t got ideas about how to cope with death then it’s very difficult when our parents die.’

What to do when a death has happened

  • Explain simply what has occurred, listening and responding with sympathy to the person’s distress.
  • Explain that when someone dies the body stops working and doctors cannot fix it, and that the person who has died is not in any pain.
  • Should the person wish to view the body, this may be helpful as part of the grieving process. However, not everyone will want to do so. Some people with learning disabilities find it helps them to understand; others may find the prospect frightening. It is important to be sensitive to this.
  • Allow the person a chance to take part in arrangements for the funeral if they wish, e.g. choosing flowers, so that they do not feel marginalised.
  • Remember that explanations can be taken literally. Being told, for example, that a deceased loved one is both buried in the cemetery and in heaven can be a confusing concept.
  • Some people like to make a ’memories album’ or a ‘memories box’ using pictures and newspaper or magazine cuttings and objects which remind them of the person who has passed away.
  • Visits to the grave or crematorium can help with moving on and coming to terms with the loss.