Bereavement and communication

Also called Grief and AAC, Breaking bad news to a non-speaking person

Grieving without speech, and being told the news in a way you can take in. Being protected from a death is being excluded from it.

What it is

Bereavement communication is two things. Being told that somebody has died, in words and at a pace that the person can understand. And then having the words to grieve: to ask where they are, to say I miss her, to be angry, to talk about the funeral, to ask whether it will happen to me.

People who do not speak are routinely left out of both. The death is not explained, or is explained once and never mentioned again, or is softened into "gone away" and the person waits for the return. And there are no grief words on the system, so the grief comes out as sleeplessness or anger and is called behaviour.

Who it can help

Anyone who uses AAC or has a learning disability, dementia or another condition that affects understanding, when somebody close to them dies. Their families, who are grieving themselves and have to do the telling. Staff in schools, homes and services, who are often the ones who notice the change.

It is also for people whose own communication changes with grief. A person who stammers may stammer more; a person with aphasia may lose words they had.

How it works

Tell the truth, plainly, using the word died. "Grandad has died. His body stopped working. He is not coming back." Say it more than once, over days, because understanding takes time and the person may need to hear it again. Use photographs, an objects of reference approach if that is how the person understands, and a social story for what will happen next: the funeral, who will be there, what people will do.

Include the person in the rituals. Going to the funeral, seeing the body if they want to, choosing a photograph, putting something in the coffin. These are how people understand that a death is real, and the person who is kept away for their own good is left with a mystery.

Put grief words on the system: died, dead, sad, miss, cry, angry, funeral, remember, heaven or whatever the family believes, and the person's name. Then use them, so the person sees that this can be talked about. See feelings vocabulary.

Getting started

If someone has just died, tell the person today, simply, and tell them again tomorrow. Add the words to the board this week and keep the person's photograph where it can be pointed at.

Make a short story of the funeral before it happens, in pictures or symbols, and go through it together. Take the device to the funeral.

For the months after: keep talking. Mark the birthday. Let the person say the name. And watch for grief that looks like something else: sleep, eating, withdrawal, a return of old behaviours. Those are the sentences a person without words is saying.

Where to get help

Beyond Words publishes wordless picture books on death and funerals that are used across services. Mencap has resources on bereavement for people with a learning disability. Alzheimer's Society covers grief and dementia. Together for Short Lives supports families of children with life-limiting conditions, including siblings. The GP can refer to bereavement counselling, and Cruse Bereavement Support runs a national helpline. See bereavement and grief in the Health A-Z.