Persistent Complex Bereavement Disorder DSM-5

Persistent Complex Bereavement Disorder DSM-5

DSM-5 Category: Conditions for Further Study

Persistent complex bereavement disorder is a DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, 5th ed.) diagnosis assigned to individuals who experience an unusually disabling or prolonged response to bereavement.

Formerly known as complicated grief disorder, persistent complex bereavement disorder causes sufferers to feel extreme yearning for a deceased loved one, usually over a prolonged period. Feelings of longing are often accompanied by destructive thoughts and behaviors, as well as general impairment in resuming normal life.

Persistent complex bereavement disorder is included in the DSM-5 chapter that outlines areas for further study.

Introduction

Bereavement is the period of time spent adjusting to loss. During this time, bereaved individuals will generally experience varying levels of grief that may manifest in feelings of shock, numbness, sadness and/or yearning for the person who has passed. It’s typical to experience a mix of emotions, as well as fatigue, disturbed dreams, distress, agitation and even guilt during the bereavement process, before acceptance sets in. For people suffering from persistent complex bereavement disorder, this final stage of adjustment may take much longer to reach.

Persistent complex bereavement disorder is characterized by unshakeable grief that does not follow the general pattern of improvement over time; instead, individuals continue to experience persistent and intense emotions or moods and unusual, severe symptoms that impair major areas of functioning, or that cause extreme distress (Shear, Simon, Wall, Zisook, Duan, Reynolds, 2011).

Symptoms of Persistent Complex Bereavement Disorder

Somebody suffering from persistent complex bereavement disorder will display symptoms that may include the following:

  • Indefinitely yearning/longing for the deceased
  • Preoccupation with the circumstances of the deceased’s death
  • Intense sorrow and/or distress that does not improve over time.
  • Difficulty trusting others
  • Depression
  • Detachment and/or isolation
  • Difficulty pursuing interests or activities
  • A desire to join the deceased
  • Persistent feelings of loneliness or emptiness
  • Impairment in social, occupational or other areas of life (Wakefield, 2017).

These symptoms are all characteristic of grief more generally, too - for a diagnosis of persistent complex bereavement disorder to be made, the patient will have been found to suffer symptoms over a prolonged period.

Normal Grief Vs. Complex Bereavement Disorder

Bereavement and grief have been part of the human experience throughout history, and are also seen in other species. The clinical stages of death and bereavement have been extensively studied (Kübler-Ross, 1969), and physiological and neurological correlates of the grieving process have been described (Freed, Yanagihara, Hirsch & Mann, 2009). About 10 to 12 percent of bereaved individuals experience a syndrome of grief that does not resolve naturally and persists for an indefinite period with varying degrees of incapacitation. This has been labeled complicated or prolonged grief disorder and can have adverse long-term health effects (Prigerson, Horowitz, Jacobs, Parkes, Aslan, Goodkin, Raphael & Marwit, 2009). Normal grief differs from the complicated or prolonged grief disorder in that normal bereavement. is not persistent, not as intense, is not disabling or life-altering and is not experienced as a severe threat by the bereaved individual. Factor analytic studies suggest that the symptoms of complicated or prolonged grief are a unitary construct distinct from the more transient symptoms of depression and anxiety that characterize normal bereavement (Prigerson, Vanderwerker & Maciejewski, 2008). 

Individuals with persistent complex bereavement disorder, or complex or prolonged grief disorder, are incapacitated by grief and focused on the loss to the exclusion of other interests and concerns. There is rumination about the death and longing for reunion with the deceased, identity confusion, inability to accept the loss, anhedonia, bitterness, difficulty trusting others and a feeling of being “stuck” in the grieving process. These are present every day, cause distress or functional impairment and persist for more than 6 months after bereavement. Patients report loss of self-worth and sense of self, feel emotionally disconnected from others and do not wish to move on from bereavement, sometimes feeling that to do so would represent a betrayal of the deceased (Prigerson, Bierhals, Kasi, Reynolds, Shear, Newsom & Jacobs, 1996). 

Diagnostic Criteria for Persistent Complex Bereavement Disorder

As persistent complex bereavement disorder is a relatively new disorder and yet to be classified, a number of diagnostic criteria have been suggested by a consortium of mental health practitioners from around the world. These are, broadly:

  • The patient experienced the death of a loved one at least six months previously

At least one of the following symptoms has been present longer than expected, taking into account the person’s social or cultural environment:
  • Intense and persistent yearning for the deceased
  • Frequent preoccupation with the deceased
  • Intense feelings of emptiness or loneliness
  • Recurrent thoughts that life is meaningless or unfair without the deceased
  • A frequent urge to join the deceased in death

At least two of the following symptoms have been recorded for at least one month:
  • Feeling shocked, stunned or numb since a loved one’s death
  • Feelings of disbelief or inability to accept the loss
  • Rumination about the circumstances or consequences of the death
  • Anger or bitterness about the death
  • Experiencing pain that the deceased suffered, or hearing/seeing the deceased
  • Trouble trusting or caring about others
  • Intense reactions to memories or reminders of the deceased
  • Avoidance of reminders of the deceased, or the opposite - seeking out reminders to feel close to the deceased

Symptoms cause substantial distress for the sufferer or impact significantly on areas of functioning and cannot be attributed to other causes.

Alternative Criteria

An alternative set of diagnostic criteria for PCBD was proposed by a consortium of authors from the United States, Canada, Israel and Japan (Shear, Simon, Wall, Zisook, Neimeyer, Duan, et al, , 2011). These require bereavement at least 6 months previously, at least 1 of 4 symptoms of acute intense grief that has persisted for longer than is expected by others in the patient’s social or cultural involvement, at least 2 of 8 symptoms of cognitive, emotional or behavioral change for at least a month, symptoms and impairment lasting more than a month and significant distress or functional impairment that cannot be better explained as a culturally appropriate response to bereavement. Prolonged grief symptoms are: intense yearning or longing for the person who has died; frequent intense loneliness or that life is empty and meaningless without the deceased; recurrent thoughts that it is unfair, meaningless or unbearable to remain alive when the loved one has died or a recurrent urge to die in order to join the deceased and frequent preoccupying thoughts or visions of the loved one.

Cognitive/emotional/behavioral symptoms include: frequent troubling rumination about the cause, circumstances or consequences of the loved one’s death; recurrent disbelief or inability to accept that the loved one is dead; persistent feelings of being shocked, dazed, stunned or emotionally numb; recurrent feelings of anger or bitterness related to the death; persistent difficulty trusting or caring for others or envy of those who are not bereaved; frequently experiencing symptoms that the loved one had, or seeing or hearing the voice of the deceased; intense emotional or physiological reactivity to memories of the deceased or reminders of the loss; and changes in behavior due to excessive avoidance of reminders of the loss, or excessive seeking after reminders of the deceased (or both).

Risk Factors For Complex Bereavement Disorder

A number of risk factors have been identified for the development of pathological grief after bereavement. These include first-degree relationship to the deceased, separation anxiety in childhood, controlling parents, abuse by or death of parents during childhood, a poorly-functioning marriage or insecure attachment style prior to widowhood, emotional dependency on the deceased, lack of preparation for the death and in-hospital death of the loved one (Ott, Lueger, Kelber & Prigerson, 2007). These symptoms are not accompanied by the changes in sleep physiology, chiefly shortened latency of REM sleep, that accompany depression, suggesting a mechanism other than mood disturbance (McDermott, Prigerson, Reynolds, Houck, Dew, Hall, Mazumdar, Buysse, Hoch & Kupfer, 2007). There is, however, activation in brain imaging of the nucleus accumbens that is not seen in non-complicated grief, suggesting that reminders of the deceased may activate the neural reward system and interfere with adaptation (O’Connor, Wellisch, Stanton, Eisenberger, Irwin & Lieberman, 2008). These risk factors and clinical measures are correlated with the persistent bereavement syndrome but not with major depressive disorder, generalized anxiety disorder or post-traumatic stress disorder (Vanderwerker, Jacobs, Selby, Parkes & Prigerson, 2006)

A prolonged state of abnormal grief has been associated with elevated rates of suicidal ideation and suicide attempts. Cancer, hypertension and cardiac events are more likely after several years, and immune disorders and evidence of immune dysfunction are more frequent. Adverse health behaviors are more frequent, and reported functional impairment is greater. Health care services are used to a greater extent and more sick leave is taken (Lannen, Wolfe, Prigerson, Onelov & Kreicbergs, 2008). This has led to the proposal of a separate psychiatric disorder of persistent and complex bereavement (Boelen & van den Bout, 2005), although it was elected in the preparation of DSM-5 to defer the establishment of this diagnosis for further study (Boelen & Prigerson, 2012). 

Differential diagnosis

Some of the symptoms associated with persistent complex bereavement disorder are also characteristic of other conditions, namely:

Normal grief - Both normal grief and persistent complex bereavement disorder may cause similar symptoms. Persistent complex bereavement disorder usually lasts longer, however, interfering with the sufferer’s functioning long after the death.

Depressive disorder - Persistent complex bereavement disorder shares features like sadness with major or persistent depressive disorder but this depressed mood is characterized by a focus on the loss.

Post-traumatic stress disorder - Individuals with post-traumatic stress disorder may suffer intrusive thoughts about a traumatic event, while those with persistent complex bereavement disorder may suffer thoughts about the deceased or the circumstances of their death.

Separation anxiety disorder - Separation anxiety disorder relates to separation from a living individual, whereas sufferers of persistent complex bereavement disorder experience anxiety when separated from the deceased (American Psychiatric Association, 2013).

Comorbidity

Persistent complex bereavement disorder may present in isolation, or comorbid with other conditions. The most common disorders to accompany persistent complex bereavement disorder are major depressive disorder, post-traumatic stress disorder and substance use disorders.

Post-traumatic stress disorder is more commonly diagnosed as comorbid with persistent complex bereavement disorder when the death was violent or traumatic.

Who is affected by persistent complex bereavement disorder?

According to estimates, between a fifth and a third of people are at risk of a complicated grief response and between ten and 20 per cent of individuals display such symptoms (Cruse, 2017). There is no single common denominator to identify who will suffer from persistent complex bereavement disorder but there are various potential contributing/risk factors.

Previous mood disorder diagnosis - pre-existing conditions like major depressive disorder may be risk factors for persistent complex bereavement disorder (Simon, Shear, Thompson, et al., 2007)

High levels of stress - individuals suffering from complicated grief have been found to report more stressors in their lives than those without the disorder (Ott, 2003).

Low levels of social support - research highlights that complicated grief sufferers self-report low levels of social support (Ott, 2003).

Personality traits such as a negative outlook and specific factors like a violent causes of death (such as suicide) may be associated with the onset of complicated grief, along with insecure attachment style or a history of trauma. Individuals who were formerly caregivers to the deceased may also be at greater risk (Lobb, Kristjanson, Aoun, Monterosso, et al., 2010)

Living with persistent complex bereavement disorder

Individuals suffering from persistent complex bereavement disorder may find that the symptoms of their condition have a host of adverse effects on their mood, functioning and relationships.

Complicated grief manifests in different ways from person to person; some individuals may become preoccupied with the deceased to the point that they display symptoms of an illness their loved one had, or attempt to feel closer to the departed by surrounding themselves with their possessions.

Others may have a different response altogether, seeking to avoid all reminders of the deceased, such as places they would frequent together, or even mutual friends. Sufferers may begin to resent others who have not experienced the loss of a loved one.

Hearing or seeing the deceased, feeling a strong desire to join them and becoming preoccupied with suicide or falling into a deep depression that impairs social or occupational areas of functioning are all symptomatic of the condition. As a result, individuals may find it difficult to resume normal activities, hold down a job or maintain friendships and relationships.

Treatment

There is no single treatment method known to cure persistent complex bereavement disorder. Medical professionals may prescribe medication, therapy or both to help sufferers manage their symptoms.

Medication - Antidepressants - specifically serotonin reuptake inhibitors - may be prescribed to help manage depressive symptoms of persistent complex bereavement disorder. However, tricyclic antidepressants have not yet been found to improve levels of grief (Jordan, Litx, 2014).

Psychotherapy - Cognitive behavioral therapy tailored towards grief has shown some success in assisting individuals with persistent complex bereavement disorder, especially in comparison with non-specific or supportive therapies (Wittouck, Van Autreve, De Jaegere, Portzky, van Heeringen, 2011).

With the right treatment - often in the form of tailored therapy, sufferers of persistent complex bereavement disorder may find that their condition improves and grief symptoms reduce accordingly.


Dr. Kevin Fleming obtained his PhD from Notre Dame and is the Founder of Grey Matters International (www.greymattersintl.com), a neuroscience-based behavior change consulting firm.

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