Ageing

5. End of life

5.9. Bereavement support (11a-d)

Bereavement care is an important part of the support needs of family members or those who matter to the person. There is guidance available to assess bereavement needs in the general population.

People with ID who have been bereaved should have a continuum of support, involving strategies at different levels such as facilitation of the person’s grief, participation in death rituals following a death and planned education around loss prior to personal experience of death. The following are important when someone with an ID has been bereaved:  

  • Ensure the active involvement (as they wish) of the person with an ID in the funeral and/or other death rituals. It is also important in residential care settings to ensure residents are supported following the death of a peer 
  • Maintain consistency in being open and honest with the person 
  • Provide information about bereavement in a format that the person can understand. This may need to be repeated often 
  • Memory books and life story books in an accessible format may be helpful in helping the person to remember and have a link with the person who has died 

Bereavement councillors may also need to use a variety of approaches to help someone with an ID experiencing grief, such as art work, creating family trees, use of pictures, photographs, videos, poetry and reminiscence work (1:65-68). 

  Photo: Jørn Grønlund

In what way people with ID respond to loss, and are best supported in the grieving process, depends in part on their understanding of mortality. Supporting people with profound ID in grief can be particularly complex. They will need to be provided with supportive relationships and sensory experiences in order to increase their sense of safety, enhance a sense of security and facilitate expression of their grief.


ACTIVITIES: 

  • If relevant, find out what the communication tool ‘picTTalk’ app is. This is a communication tool for use on tablet computers, freely downloadable from iTunes and Google Play. 
  • If relevant, find out together with your child/sibling/client how ‘picTTalk’ can be useful to talk about loss and bereavement.
  • Google the following keywords in your language: intellectual disabilities, loss and bereavement support, accessible text, easy-to-read. Discuss your findings with your child/sibling/client.