Death and Grief as Experienced by Adults with Developmental Disabilities: Initial Explorations

The experiences of persons with developmental disabilities (DD) in two northern-tier states were studied on an exploratory basis. Overall, the analysis reveals that caregivers in residential facilities believed that persons with DD (primarily global cognitive disabilities) benefit from the same grief processing rituals as other individuals. Some conflicting attitudes were revealed, however. Specifically, many respondents expressed a sense that caregivers (or family members) “know best” when individuals with disabilities prove “ready” to experience the activities and ritual surrounding loved ones' deaths. In addition, many respondents argued that clients with cognitive disabilities ought to be educated ahead of time as to what happens during the death and dying process. Primary care providers reported very few overt behavioral changes, though four clients in 10 were observed to cry more frequently (for more than 1 month) and about one-fifth reportedly experienced changes in sleep/wake patterns. Initial evidence emerged that staff training patterns varied by facility, not with years of service.