Grief and Bereavement in People With Intellectual Disabilities

Philip C. Dodd; Suzanne Guerin


Curr Opin Psychiatry. 2009;22(5):442-446. 

In This Article

Pathological Grief

For some individuals, intense prolonged symptoms can exist following a bereavement, with resultant severe functional impairment. This clinical entity has been variously described using terms such as complicated grief, traumatic grief, atypical grief, and delayed grief, among others. More recently, 'prolonged grief disorder' has been proposed as the agreed term, representing a distinct clinical entity.[8••] Prigerson et al.[8••] are leading the argument for its inclusion in the forthcoming Diagnostic and Statistical Manual for Mental Disorders-V.[9] Criteria for prolonged grief disorder require that bereaved individuals experience severe levels of the following symptoms: yearning, disbelief, bitterness over the loss, confusion about one's identity, a sense of numbness, distrust of others, a feeling that life is meaningless since the loss, difficulty accepting the loss, as well as feeling stunned by the loss, and must experience five of nine of these symptoms for 6 months or longer after loss. As described in Prigerson et al.'s[8••] review, individuals who meet the diagnostic criteria for prolonged grief disorder have been shown to be at an increased risk of developing clinically distinct posttraumatic stress disorder, generalized anxiety disorder, major depressive disorder as well as suicidal ideation.

Of course, concerns have been raised about associating severe psychopathology, such as that proposed in prolonged grief disorder, with bereavement, a life event that is universal and is at the heart of the definition of life itself. It has been argued that people given a diagnosis of prolonged grief disorder will be stigmatized.[10] A recent study by Johnson et al. [11•] looked at the issue of stigma associated with significant grief morbidity. This North American study, part of a larger prospective grief study, consisted of 135 widowed participants being interviewed and completing a study-specific questionnaire, enquiring about the individual's willingness to accept mental health interventions, as well as attitudes to severe grief symptoms and experiences of stigmatization due to bereavement-related distress. The vast majority of people in their sample who were found to have a prolonged grief disorder reported that they would be relieved to know that they had a recognizable psychiatric condition, and 100% of those with prolonged grief disorder reported that they would be interested in receiving treatment for their severe grief symptoms. There was a significant association between the severity of grief symptoms and reported negative reactions from friends and family members.

Recent evidence again suggests that prolonged grief continues to cause morbidity to sufferers, long after the index loss. A recent European study by Lannen et al.[12] looked at a cohort of parents who had lost a child to cancer 4–5 years before the study. Overall, 449 parents completed a questionnaire (80% response rate) covering issues such as grief resolution, as well as physical and mental well being. One in four bereaved parents reported that they had not significantly worked through their grief. Both mothers and fathers with unresolved grief were more likely to report higher levels of anxiety and depression as well as decreased quality of life than other bereaved parents. These comorbidities were related to other forms of dysfunction, such as poor performance at work and sleep disturbance, as well as increased utilization of health services.


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