Supporting People as the Age
Grief, Loss, and People with IDD: What Every DSP Should Know
One of the greatest rewards of being a direct support professional (DSP) is the deep, personal bonds formed with the individuals you support. DSPs share routines, inside jokes, milestones, and celebrations. But alongside these joyful moments, DSPs often witness profound losses and challenges. When someone with an intellectual or developmental disability (IDD) experiences the death of a loved one, DSPs are often unsure how to respond. Further, outdated assumptions about the emotional lives of people with disabilities persist.
Bethany Chase
The Myth of “Not Understanding”
For decades, professionals claimed that people with IDD could not form true attachments, did not understand the concept of death, and therefore, did not grieve. As recently as the 1980s, individuals living in institutions were intentionally shielded from death announcements and excluded from mourning rituals (Gaventa, 2021). Today, many still believe our role is to “soften the blow” through distraction, omission, or avoidance. Even if we acknowledge that grief is a universal human experience, we may still find ourselves asking: Am I capable of helping? How much information is too much? Should we excuse them from some of the rituals? Will talking about this just upset them more? What should I do?
Vague or “softer” language will not make the pain more manageable, but it may make the situation more confusing. Remember, the pain of loss cannot be avoided, but understanding that it has happened is essential.
Tip 1: Use clear, honest, and concrete language
Supporting people with IDD through the death of a loved one begins with direct communication. Avoid euphemisms like “passed away,” “is in a better place,” or “went to sleep,” as these can be confusing or frightening. Use language that is simple and clear: “Your Aunt Tracey died. That means her body stopped working, and it will not start working again. Because Aunt Tracey died, she is not coming back.” Vague or “softer” language will not make the pain more manageable, but it may make the situation more confusing. Remember, the pain of loss cannot be avoided, but understanding that it has happened is essential.
Tip #2. The problem isn’t the grief; it’s the exclusion
Often with the best intentions, family members, friends, and DSPs may suggest skipping a family ritual or ceremony out of concern that participating might “further upset” the person or cause disruption. And, as mentioned previously, some may assume that someone with significant cognitive disabilities does not need to be notified or included because they “won’t understand.” However, even if someone does not appear to comprehend or cannot respond verbally to the information provided, it is still important to share the truth with them and include them in the grief process. The absence of verbal comprehension does not mean they do not recognize the loss of someone they love (Brickell & Munir, 2008), and cognitive disability does not protect someone from the emotional impact of grief (McRitchie et al., 2014). Moreover, because people with IDD may express grief through changes in behavior, mood, or routine rather than words, their distress is often misunderstood. These changes may be misinterpreted as a “regression” or “behavioral issues” rather than a natural response to loss. Having one’s grief go unacknowledged and unvalidated is known as disenfranchised grief (Doka, 1989). This common experience in the IDD community invalidates their response to pain, creates isolation, and often intensifies emotional distress over time (McRitchie et al., 2014). Inclusion in information, in mourning, and in ritual is what helps protect against the experience of disenfranchised grief.
Tip 3: When a death is expected, plan ahead
When the death of a loved one is anticipated, preparing ahead can help. Creating an anticipatory support team ensures that familiar, trusted people will be present during the grieving process. Concepts like death and loss can be introduced through familiar stories, TV shows, or real-life examples. If possible, help the person visit the place where the funeral or memorial will occur, and talk through what to expect. When working with families, offer choices about how the person could be involved throughout the process.
Tip 4: Embrace the power of ritual
Rituals can play a powerful role in helping all of us process grief. For people with IDD, rituals can offer accessible ways to express sorrow, say goodbye, and remain connected to the person who died (Markell, 2004). Rituals grounded in everyday objects, such as drawings, memory boxes, music, candles, food, and storytelling, can provide comfort, structure, and meaning. Tactile and sensory experiences can help anchor emotions in something concrete. For example, drawing a picture, lighting a candle, or preparing a loved one’s favorite meal can encourage emotional expression. Other meaningful options include planting a tree, decorating stones for a memory garden, or making pendants that can be worn or carried. These activities are not only helpful for the grieving person but also offer DSPs meaningful ways to provide support. Having something to do together that honors the loss and celebrates the person’s life creates a shared space for healing (Markell, 2004).
Tip 5: Pay attention to grief triggers and “tender times”
Grief does not end with the funeral, and it is a myth that time heals all wounds. Anniversaries, birthdays, holidays, and seasonal changes can bring grief back to the surface, sometimes unexpectedly. For people with IDD, these grief moments may be expressed through behavioral changes, emotional distress, questioning, or searching for the deceased. DSPs can plan for common “tender times,” and offer gentle, proactive support. For example, you might say, “Today is your sister’s birthday. Would you like to look at her photo album or light a candle for her?” Reengaging in familiar rituals can offer comfort and acknowledgement.
Final Thoughts
People with IDD deserve to be seen in their grief, supported in their pain, and included in rituals that bring meaning and connection. You do not need to have all the answers, nor do you need to specialize in grief supports to make a meaningful difference in the lives of those you support. You are more prepared than you think.
References
Brickell, C., & Munir, K. (2008). Grief and its complications in individuals with intellectual disability. Harvard Review of Psychiatry, 16(1), 1–12.
Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lexington Books.
Gaventa, B. (2021). Coping with grief in the lives of people with intellectual disabilities and/or autism. Faith Inclusion Network. https://www.youtube.com/watch?v=ZZr0SyfVcAM
Markell, M. (2004). Helping people with developmental disabilities mourn: Practical rituals for caregivers. Companion Press.
McRitchie, R., McKenzie, K., Quayle, E., Harlin, M., & Neumann, K. (2014). How adults with an intellectual disability experience bereavement and grief: A qualitative exploration. Death Studies, 38(3), 179–185. doi: 10.1080/07481187.2012.738772