Supporting someone with an intellectual disability

Just as people with intellectual disabilities experience love and connection, they also experience grief and loss. Therefore, it is essential that they have access to care and support when someone or something important to them is lost.

The experience

“The myth that someone with an intellectual disability doesn't experience all shades of loss can lead to misunderstandings and a lack of support.”

Most people with an intellectual disability want their rights, feelings, and dignity to be respected. When they are not given information or included in other ways, they often feel excluded, ignored, hurt, or angry.

Here are some examples of losses that people with intellectual disabilities may grieve:

  • Loss of ability or capacity
  • Loss of home or having to relocate
  • Changes in familiar routine
  • Loss of housemates, fellow residents, or caregivers
  • The end of important relationships
  • Dreams and hopes like marriage, parenthood, education, and employment
  • Deaths of parents, siblings, friends, and caregivers

Expressions of Grief

Everyone expresses their grief in their own way, and this is no different for people with intellectual disabilities. 

  • Some people may take longer than expected to understand that the loss has happened.
  • Some people may need to talk about or express their grief over a longer period of time than expected.
  • Some people may express their grief in unexpected or unusual ways; the link between these behaviours and grief may not be recognized.
What You Can Do When You’re Supporting Someone

Talking about Death and Dying 

Having conversations about loss and grief before a significant loss is important. Encouraging these conversations in an open and natural way creates a foundation of trust to build on when losses occur. Here are some guidelines:

  • Give people plenty of time to process information. It may take longer than you anticipate. 
  • Use teachable moments to start a conversation, for example, if someone on a favourite TV show moves away or when a house pet dies. 
  • Be curious about the person’s perspective, normalize feelings, and invite questions.
  • Get to know the person’s loss history. How do they think about death and grief, and what are their personal and cultural beliefs?
  • Expect to repeat and review information several times. It may take more time for them to process it than you expect.

See also: 

Tips and Strategies

Grief support requires compassion, patience, and commitment. It must be based on the grieving person’s needs and not your own. You might begin by expressing your condolences and asking how the person is doing. 

As You Are Listening

  • Let them know that it is okay to cry, to miss the person, and to talk about them as much as needed. 
  • If you are also grieving, there may be times when it might be helpful to talk about your own experience as a way of modelling. 
  • Revisit these conversations and check in regularly. Grief does not happen in one moment.

What Can Help

  • Effective communication about death, dying, and grief requires a level of comfort with these conversations. If you do not feel comfortable, find someone who is.
  •  If you’re feeling intensely upset about the death yourself, and you worry that your grief may overwhelm others, it’s important that you find someone else to talk with. The intensity of your grief may be frightening for the other person.
  • Avoid using abstract language and terms. Instead, use concrete language.

Instead of saying:

Try:

  • passed away
  • gone to heaven
  • not alive
  • stopped breathing
  • heart stopped beating
Take Aways

Grief experienced by people with intellectual disabilities often goes unrecognized or unacknowledged. Intellectual disability includes a wide range of abilities, and a person’s grief responses will depend on many factors, for example, personality, loss history, relationship with the person who died, and available support. Your patience, respect, and good listening skills are key to providing support.

See also: 

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