Prolonged grief disorder (PGD), also known as complicated grief (CG),[1]traumatic grief (TG)[2] and persistent complex bereavement disorder (PCBD) in the DSM-5,[3] is a mental disorder consisting of a distinct set of symptoms following the death of a family member or close friend (i.e. bereavement). People with PGD are preoccupied by grief and feelings of loss to the point of clinically significant distress and impairment, which can manifest in a variety of symptoms including depression, emotional pain, emotional numbness, loneliness, identity disturbance and difficulty in managing interpersonal relationships.[4] Difficulty accepting the loss is also common, which can present as rumination about the death, a strong desire for reunion with the departed, or disbelief that the death occurred.[5] PGD is estimated to be experienced by about 10 percent of bereaved survivors, although rates vary substantially depending on populations sampled and definitions used.[6]
The individual's relationship to the deceased accounts for a large amount of variance in symptoms. Spouses, parents, and children of deceased tend to display highest severities, followed by siblings, in-laws, and friends. Subjective closeness to deceased has also been found to be an important predictor of pathologic grief responses.[14] Bereaved persons often feel a need to understand why their loved one died by suicide, particularly if a message was not left behind by the deceased.[15]
Grief is a common response to bereavement, occurring in a variety of severities and durations, however only a minority of cases of grief meet the severity and duration criteria to merit diagnosis of PGD; it is considered when an individual's ability to function and level of distress over the loss is extreme and persistent.[5] People with PGD can experience a chronic aching and yearning for the dear departed, feel that they are not the same person anymore (identity disturbance), become emotionally disconnected from others, or lack the desire to "move on" (in some cases feeling that doing so would be betraying the person who is now deceased).[9][10][8] Although normal grief remains with the bereaved person far into the future, its ability to disrupt the survivor's life is believed to dissipate with time.[16]
Since the 1990s, studies have demonstrated the validity of distinguishing PGD from mental disorders with similar symptom clusters, specifically major depressive disorder and post-traumatic stress disorder.[17][9] Validity has also been demonstrated for the DSM-5-TR criteria.[18]
Diagnosis
Both DSM-5-TR or the ICD-11 are manuals that describe the diagnostic criteria for prolonged grief disorder. As early as 2009, diagnostic criteria for PGD were proposed and later revised.[9] However, the DSM-5 (2013) did not include PGD; it was only added later in the DSM-5-TR (2022). The ICD-11 was published in 2022 and also included PGD. Compared to the DSM-5-TR criteria, the ICD-11 allows for a shorter duration of grief responses in adults before diagnosing prolonged grief disorder.[9]
DSM-5-TR
Prolonged grief disorder in the DSM-5-TR is classified as a "trauma and stressor-related disorder". The diagnosis is given when someone experiences intense and persistent grief following the death of a close person. Key symptoms include intense longing or preoccupation with the deceased, along with additional signs such as disturbances in the sense of identity, difficulty accepting the death, intense emotional pain or numbness, feeling very lonely, and finding that life is meaningless. The symptoms must cause significant distress or impairment, exceed cultural expectations for grief, and not be better explained by another mental or medical condition.[19]
According to psychologist Holly Prigerson, an editor on the trauma and stressor-related disorder section of the DSM-5-TR,[19] strong and ongoing longing for the deceased is a key symptom of prolonged grief, but it is not a feature of depression or any other disorder in the DSM.[16]
ICD-11
Prolonged grief disorder in the ICD-11 is diagnosed when a person experiences ongoing and intense grief after the death of someone close. Core symptoms include strong longing or preoccupation with the deceased, combined with emotional pain such as sadness, guilt, anger, or numbness. The grief must last longer than culturally expected and cause significant disruption to daily life. Additional signs include difficulty coping without the deceased, problems recalling positive memories, social withdrawal, and increased substance use or suicidal thoughts. The diagnosis should reflect the individual's cultural norms and not be confused with normal bereavement or other mental health conditions like depression or PTSD. Children and older adults may show grief differently depending on developmental stages.[20]
Assessment tools
Multiple assessment tools specifically for grief related to bereavement have been developed. The Brief Grief Questionnaire, the 13-item Prolonged Grief-13-R and the 19 item Inventory for Prolonged Grief are screening tools which may suggest the presence of a prolonged grief disorder, with further interview and grief history inventory required to establish a diagnosis.[21] The Inventory of Complicated Grief (ICG) (developed in 1995) is validaded to assess grief symptoms and remains widely used today.[22][23] According to a 2020 systematic review, there were eleven assessment tools, three of which are designed for clinical interviews.[3] The Traumatic Grief Inventory Self-Report[24] was the only assessment tool found to have empirical evidence supporting use as a diagnostic tool.[3]
Causes
No specific causes guarantee onset of PGD. Known risk factors include one-time incidents along with chronic conditions and neurological abnormalities. One-time incidents include:
The death was due to a violent method, such as homicide or suicide[25]
Treatment is strongly recommended for prolonged grief disorder.[21] The first line treatment is Grief Focused Psychotherapy.[40][41] Specifically, Prolonged Grief Therapy has the best evidence of effectiveness.[21] Antidepressants may be combined with grief focused therapy when one is having symptoms of concomitant depression, including co-existing major depression.[21] However, medications as a sole therapy for grief related symptoms has not been shown to be helpful and is not recommended.[21][42]
A combination of relational and cognitive-behavioral interventions have shown evidence for efficacy when treating individuals who have lost loved ones to suicide.[15] This includes interventions that target the client's sense of self and lingering emotional attachment to the deceased, as well as any experiences of intrusion, anxiety, and/or avoidance. Acceptance of irreversibility of the death is considered a prerequisite for acceptance and acknowledgement of the loss. Exposure therapy has mixed evidence and in some cases intensifies symptoms, suggesting effectiveness does not vary significantly compared to non-exposure therapies especially with comorbid PTSD.[43][15]Group therapy has mixed evidence, and has been shown to be less helpful when compared to other treatments.[15]
Epidemiology
According to a 2017 meta-analysis, prevalence of prolonged grief is estimated to be 9.8%, although higher prevalence estimates, as high as 49%, are possible if the death was not due to natural causes.[6][44][45] PGD is also more prevalent when the death is by a violent method such as homicide or suicide, with an estimated 70% of those with PGD in the study having been exposed to bereavement by a violent method.[25] Conversely, PGD is less common in cases where the bereaved death was due to natural disasters.[45][46] PGD has higher prevalence in women.[25][45] There is a high comorbidity rate with somatic symptom disorders,[11] depression, anxiety and post-traumatic stress disorder, with PGS being observed as heterogenous.[47]
Losing a loved one to cancer can cause intense feelings of grief, as family members typically take on a caregiver role. [48] Caregivers experience caregiver burden, due to the multifaceted role of caregiving, which can influence the level of grief experienced.[49] A 2021 meta-analysis identified a global prevalence of 14.2% in prolonged grief disorders among bereaved families dealing with cancer-related deaths.[48]
There exists conflicting evidence on whether PGD is more or less common in eastern countries compared to western countries.[6][45]
History
The DSM-IV and ICD-10 do not distinguish between normal and prolonged grief.[50][51] Based on numerous findings of maladaptive effects of prolonged grief, diagnostic criteria for PGD have been proposed for inclusion in the DSM-5 and ICD-11.[9][52] In 2018, the WHO included PGD in the ICD-11,[53] and in March 2022 the American Psychiatric Association added PGD in the DSM-5-TR.[19]
The proposed diagnostic criteria were the result of statistical analysis of a set of criteria agreed upon by a panel of experts.[9][54] The analyses produced criteria that were the most accurate markers of bereaved individuals with painful, persistent, destructive PGD.[9] The criteria for PGD have been validated and dozens of studies both internationally and domestically are being conducted, and published, that validate the PGD criteria in other cultures, kinship relationships to the deceased and causes of death (e.g. earthquakes, tsunami, war, genocide, fires, bombings, palliative and acute care settings).[55][56]
Traumatic grief (TG) or complicated grief was a term initially used to identify a complex syndrome in which an individual experiences a unique distress resulting from the simultaneous occurrence of psychological trauma and the loss of a loved one.[5]PTSD and PGD, while being separate diagnoses, do have overlap, as both include similar symptoms of intrusive thoughts relating to death, experiencing numbness to emotions, and possible disturbances in sleep.[5] The central components of complicated grief originally included yearning, separation distress, and inability to acknowledge the loss.[57]
Controversy
Although evidence suggesting the validity of PGD has existed since 1995,[17] its inclusion into the DSM-5-TR and ICD-11 was slow, including many rejections of earlier proposals for inclusion as a diagnosis. Part of the rationale for this rejection was a concern that "[...] introducing a grief diagnosis would pathologize normal grief reactions and potentially lead to over-prescription of psychotropic medication for the bereaved."[58]
Recognizing prolonged grief as a disorder was argued to allow it to be better understood, detected, studied and treated. Insurance companies would also be more likely reimburse its care. However, inclusion of PGD in the DSM-5 and ICD-11 was thought at risk of being misunderstood as medicalization of grief, reducing its dignity, turning love into pathology and implying that survivors should quickly forget and "get over" the loss. Bereaved persons may be insulted by having their distress labeled as a mental disorder. While stigmatization would not be the intent, it might be an unintended consequence. In spite of this concern, studies have shown good accuracy for the ICD-11 and DSM-5-TR definitions, and that nearly all bereaved individuals who met the criteria for PGD were receptive to treatment and their families relieved to know they had a recognizable syndrome.[59] In addition, a 2020 study found that labeling PGD symptoms with a grief-specific diagnosis does not produce additional public stigma beyond the stigma of these severe grief reactions alone.[60]
Stigma
Historically, there have been systemic consequences for family members that survive a loved one's suicide. During the Middle Ages families were often excommunicated and taxed by the Church if a family member had died by suicide. This often led to families losing their landholdings, inevitably being forced to live in poverty or emigrate to another region.[61]
Some insurance policies prevent benefits from being accessed if an individual has died by suicide within a certain timeframe of taking out the policy.[61]
1 2 Prigerson HG, Frank E, Kasl SV, Reynolds CF, Anderson B, Zubenko GS, etal. (January 1995). "Complicated grief and bereavement-related depression as distinct disorders: preliminary empirical validation in elderly bereaved spouses". The American Journal of Psychiatry. 152 (1): 22–30. CiteSeerX10.1.1.466.8151. doi:10.1176/ajp.152.1.22. PMID7802116.
1 2 3 4 5 Simon, Naomi M.; Shear, M. Katherine (3 October 2024). "Prolonged Grief Disorder". New England Journal of Medicine. 391 (13): 1227–1236. doi:10.1056/NEJMcp2308707.
↑ Prigerson HG, Maciejewski PK, Reynolds CF, Bierhals AJ, Newsom JT, Fasiczka A, etal. (November 1995). "Inventory of Complicated Grief: a scale to measure maladaptive symptoms of loss". Psychiatry Research. 59 (1–2): 65–79. doi:10.1016/0165-1781(95)02757-2. PMID8771222. S2CID34298459.
↑ Barry LC, Kasl SV, Prigerson HG (2002). "Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death". The American Journal of Geriatric Psychiatry. 10 (4): 447–57. doi:10.1176/appi.ajgp.10.4.447. PMID12095904.
↑ Hebert RS, Dang Q, Schulz R (June 2006). "Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH study". Journal of Palliative Medicine. 9 (3): 683–93. doi:10.1089/jpm.2006.9.683. PMID16752974.
1 2 Vanderwerker LC, Jacobs SC, Parkes CM, Prigerson HG (February 2006). "An exploration of associations between separation anxiety in childhood and complicated grief in later life". The Journal of Nervous and Mental Disease. 194 (2): 121–3. doi:10.1097/01.nmd.0000198146.28182.d5. PMID16477190. S2CID8995920.
↑ Johnson JG, Zhang B, Greer JA, Prigerson HG (January 2007). "Parental control, partner dependency, and complicated grief among widowed adults in the community". The Journal of Nervous and Mental Disease. 195 (1): 26–30. doi:10.1097/01.nmd.0000252009.45915.b2. PMID17220736. S2CID45358849.
↑ Silverman GK, Johnson JG, Prigerson HG (2001). "Preliminary explorations of the effects of prior trauma and loss on risk for psychiatric disorders in recently widowed people". The Israel Journal of Psychiatry and Related Sciences. 38 (3–4): 202–15. PMID11725418.
↑ Mitchell AM, Kim Y, Prigerson HG, Mortimer-Stephens M (2004). "Complicated grief in survivors of suicide". Crisis. 25 (1): 12–8. doi:10.1027/0227-5910.25.1.12. PMID15384652.
↑ van Doorn C, Kasl SV, Beery LC, Jacobs SC, Prigerson HG (September 1998). "The influence of marital quality and attachment styles on traumatic grief and depressive symptoms". The Journal of Nervous and Mental Disease. 186 (9): 566–73. doi:10.1097/00005053-199809000-00008. PMID9741563.
↑ McDermott OD, Prigerson HG, Reynolds CF, Houck PR, Dew MA, Hall M, etal. (March 1997). "Sleep in the wake of complicated grief symptoms: an exploratory study". Biological Psychiatry. 41 (6): 710–6. doi:10.1016/S0006-3223(96)00118-7. PMID9066995. S2CID22306103.
↑ Boelen PA, de Keijser J, van den Hout MA, van den Bout J (April 2007). "Treatment of complicated grief: a comparison between cognitive-behavioral therapy and supportive counseling". Journal of Consulting and Clinical Psychology. 75 (2): 277–84. doi:10.1037/0022-006X.75.2.277. PMID17469885.
↑ National Center for Health Statistics (2009) International Classification of Diseases, Tenth Revision (ICD-10).; Available at: CDC. Accessed 12 July 2012.
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