Children usually already know something is wrong. They pick it up from the atmosphere in the house, from overheard phone calls, and from being sent out of the room.
Tell them sooner rather than later
Child Bereavement UK advises telling a child as soon as possible, before they overhear it or assemble their own version from fragments. Marie Curie gives the same advice, and notes that delay makes it more likely a child will invent an explanation of their own, which is often worse than the truth.
Pick a quiet place with no distractions. Stay close. If the child does not want to be held, sitting beside them is enough. If you are the one breaking the news, it helps to have another trusted adult there with you.
Signal that you have sad news, then say it clearly.
Use the real words
Both organisations are firm on this. Use dead and died. Avoid lost, passed away, gone to sleep and gone away, because young children take them literally, and a child who hears that someone went to sleep and did not wake up may become frightened of bedtime.
Child Bereavement UK also advises against describing a serious illness as poorly, because a child who later has a cold may think they are dying.
Keep the first sentence simple. More can follow.
Expect the same questions again
Young children take information in small pieces and need to hear it more than once. Repeated questions are part of understanding, not a sign the first conversation failed.
The advice on answering is to answer the question that was asked, honestly and briefly, without adding detail that was not requested. Asking a child what they think first shows you what they already believe. If you do not know an answer, say so and promise to find out.
Two reassurances are worth giving without being asked. That nothing they thought, said or did caused this. And what is happening in the next few days, including when you will be back if you go out.
What children under five need
Child Bereavement UK notes that children under five often cannot tell dead from alive. Concrete examples help, such as a dead leaf or insect, with an explanation that a dead body stops breathing, moving, eating and feeling.
Older children can be asked how much they want to know, and told as much as they ask for.
Funerals
Explain beforehand what a funeral is and what will happen. Very young children can come with the family, and older children can be offered a choice. The important thing is preparation, no pressure, and permission to change their mind at the last minute. Small involvements help: a drawing for the coffin, a chosen song or a poem. Some children find seeing the body helps them say goodbye, when they have been well prepared for it.
Children in families where the illness is inherited
Questions about inheritance may follow, sometimes much later. Genetic counselling is the place for those conversations, and it comes before any testing. Counselling first and the right not to know explain how that works. Nothing needs to be decided now, and in the UK the National Prion Clinic can offer follow-on care to at-risk relatives.
Where to get help
Child Bereavement UK supports children, young people and the adults caring for them, on 0800 02 888 40, by text or WhatsApp on 07418 341800, and by live chat and email, from 8am to 8pm Monday to Friday. The Marie Curie Support Line offers emotional support for adults on 0800 090 2309 and at support@mariecurie.org.uk.
Both are UK services. Support groups lists prion disease organisations in other countries, and grief and bereavement covers support for the rest of the family. What to expect describes the course of the illness, when you are ready to read it.