The thing about grief is that it’s something you shouldn’t be ashamed to feel. It is better to tell people about it than to hold it in. If you keep holding it in, it can only bring you down more instead of bringing you up.

Never underestimate what a person with an intellectual disability understands about death. –Support worker

This resource has been designed to help you understand more about grief and about supporting people with intellectual disabilities who are grieving. It was developed by the Canadian Virtual Hospice in collaboration with national grief specialists and people with intellectual disabilities who have experienced grief. We are grateful to those who shared their wisdom and experiences. 

About this resource:  Grief Support for People with Intellectual Disabilities

People with intellectual disabilities often live well into adulthood and are just as likely to experience grief and loss (both death-related and non-death) as people without intellectual disabilities. This can include loss of ability; loss of home; relocation; changes in routine; loss of fellow group home residents, friends, or caregivers; or deaths of parents, siblings, and friends.

Not acknowledging the grief experience of people with intellectual disabilities does them a great disservice. Grief is not solely an intellectual experience. Grief affects all of us on many levels and can be expressed not only through language but also through moods and behaviours.

When people with intellectual disabilities are not acknowledged to be grieving, they do not receive the social support that is known to be a strong protective factor in the grieving process.

Whether you work with, are related to, or are friends with someone with an intellectual disability, completing this module will help you:

• Understand the needs of grieving people with intellectual disabilities.

• Identify “teachable moments” for discussing death, dying, and grief.

• Recognize and respond to behaviours that may be grief related.

• Identify ways to support your own grief as well as the grief of those with intellectual disabilities.

 

Getting started

We recommend that you review the nine Grief Basics modules found on our MyGrief.ca site:

• Grieving before the loss

• Understanding grief

• How has this loss affected my family and me?

• Moving through grief

• Making sense of intense emotions

• Managing difficult situations

• Caring for yourself

• Do I need more help and where do I find it?

• When life starts to get better

As you read through this information…

We encourage you to revisit these resources often as you may find they are useful depending on the support you are providing.  What you find helpful may change over time. You might also recognize your own experiences or find that some of them aren’t reflected here. If there is content you believe should be added, please tell us about it in the survey at the end.

As you read this, you may have strong emotions or feel uncomfortable. It’s okay to step away from it for a while, or it might help to talk with a trusted family member or friend. Canadian Virtual Hospice provides online Discussion Forums where you can connect with others who may be supporting others or have experienced similar losses themselves. You can also ask our healthcare team a confidential question at Ask a Professional. You will receive a written response within three business days (not including Canadian statutory holidays).

A note about language

Intellectual disability is a term used to cover a wide spectrum of ability. People with intellectual disabilities have varying abilities in cognitive functioning and skills, including communication, social, and self-care skills, and they may experience physical challenges as well. In addition, the living arrangements of people with intellectual disabilities vary: some people live in care while others live with family or in the community with formal and/or informal supports.