First the problem is largely ignored. Research shows a denial in family and paid caregivers (and professionals) that persons with DD’s grieve. In fact they do grieve, and prolonged grief may turn into depression, mania, aggression, or lethargy.
Second misunderstandings can create unrealistic fear. Family and caregivers often feel the need to “protect” the individual and avoid discussions about death. This includes both before and after the passing. The passing may have been predicted by others; however, it may seem extremely sudden to the person with ID. Lack of communication may also lead to misunderstandings about the permanent nature of death, feelings of abandonment, and fear of what caregivers feel awkward discussing. Individuals with developmental disabilities may overhear conversations they do not understand and may have unnecessary anger and fear about medical procedures.
Third healthy grieving includes adapting to a new life through learning new skills in a grief process called reorientation. Persons with DD’s often lack the self-determination or ability to learn new skills. Instead they are often moved to paid caregiver services. Along with the loss they are grieving, they are stressed with changes in their living arrangement, day services, gain housemates, and perhaps even a move away from their familiar community.
Fourth those most likely to have complicated or prolonged grief are those that ask “why” and don’t find any meaning. Their personal understanding of the world as a safe, predictable place is shaken and they lack the ability to make sense of it. Persons with intellectual disability are likely to look to their own behavior to explain why creating feelings of guilt and remorse.
Fifth, there may be a delay in the grieving process which makes it difficult to connect emotions and behavior to the loss. Persons with DD may take time to understand the permanent nature of the loss. They may be “protected” from having to attend ceremonies and rituals. They may be unable to understand the full impact of the loss on their lives for some time.
Research shows that individual therapy helps, particularly if grieving is continued (or delayed) beyond 3-6 months. Counseling can help to correct cognitive errors about death, help to develop personal rituals, give honor to the person who has died, and help them make meaning or find benefit (e.g., personal growth) in the loss. If someone you know has an intellectual disability and has experienced a loss – consider having a mental health professional familiar with intellectual disabilities assess for prolonged or complicated grief. Call AdultSpan Counseling at 429-6879
Dowling, S., Hubert, J., White, S., & Hollins, S (2006). Bereaved adults with intellectual disabilities: A combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research, 50(4), 277-287).
Brickell, C. & Munir, K. (2008). Grief and its complications in individuals with intellectual disability. Harvard Review of Psychiatry, 16(1), 1-12.