Supporting someone with intellectual disabilities: Chapter 3: How to talk about death: General conversations about death, dying, and grief

Chapter 3: How to talk about death

General conversations about death, dying, and grief

The grief expert says

Cara Grosset, social worker, highlights the importance of explaining about how bodily functions have stopped when someone dies.(3:22)Video transcript

Cara Grosset, social worker, speaks about using teachable moments to speak about dying and death.(3:22)Video transcript

I've been there

Claire shares about what her Grampy means to her.(3:22)Video transcript

I found I had to have ongoing, concrete examples, such as how flowers die. The more concrete, the better. It was also helpful to have explained the concepts of death and dying before a person experiences it. –Support worker

In general, death, dying, and grief are not topics of everyday conversation. This is often truer for people with intellectual disabilities.

Having conversations about these subjects prior to a death can be helpful in normalizing death, dying, and grief. There are many ways to model talking about dying, death, and grief so that they become familiar topics and to provide basic education that is matched with an individual’s intellectual abilities. This can pave the way for further discussions and explorations. Below are some basic guidelines to help you have these conversations. Click on each for additional information.

Use “teachable moments” to start a conversation

Some examples include:

The death of a bird, pet, or insect, or finding the body of a dead animal with the person.

Grief portrayed by a character in a movie.

Community rituals following a death, such as a funeral, celebration of life, or wake.

Keep key points in mind

These points could include:

When someone dies, their body stops working.

Everything that is alive will die.

The person who died will not come back, but we continue to have memories and feelings about them.

Some questions have no easy answers.

Avoid using abstract terms

Avoid euphemisms, such as “lost” or “passed away,” which are abstract and confusing. Instead, use words like “died” or “dead.”

Considerations

Effective communication about these topics requires a level of comfort with these conversations. If you do not feel comfortable in this role, find someone who is. Ideally, this will be someone familiar to the person with the intellectual disability.