Persistent Complex Bereavement Disorder

Introduction

Image courtesy of bphope Opens in new window Persistent Complex Bereavement Disorder (PCBD)—also called Complicated Grief [CG]—is a debilitating syndrome that is comprised of symptoms that interfere with adaptation and re-engagement in life following the loss of a loved one. Bereavement can cause the bereaved significant distress and impaired functioning, and is associated with negative outcomes including elevated suicide risk.

Grief is an intensely painful but natural and normal psychological response following the death of a loved one. Even though there is no uniform pattern for adapting to loss, for the majority of people, acute grief naturally evolves over time into a more integrated, less painful form of grief in a way that is healthy and adaptive and ultimately enables return to a satisfying life without the deceased.

However, a growing literature has shown that complications can arise such that the natural recovery from acute grief stalls and grief becomes persistently intense and debilitating. This condition has been assigned different names including traumatic grief (Cohen et al., 2006), prolonged grief (Prigerson et al., 2009; Bryant et al., 2014), and most commonly, complicated grief (Shear et al., 2011) in the literature.

In DSM-5, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the term persistent complex bereavement disorder (PCBD; p. 289) is used to describe this impairing grief reaction and is included in DSM-5 as a subtype of Other Specified Trauma- and Stressor- Related Disorder (309.89 [F 43.8]).

Because of its simplicity the and the substantial prior clinical literature using the term “complicated grief” (CG), this entry uses the term complicated grief (CG) interchangeably with persistent complex bereavement disorder (PCBD), to discuss the etiology, diagnostic and clinical features, and treatment of the condition.

Etiology

Loss of an Attachment Relationship

The theory of attachment Opens in new window as proposed by Bowlby (1978) suggests that humans have a biological instinct to seek out secure attachments with other people.

A securely attached relationship provides a secure base from which one can explore and try new things, as well as a source of comfort and safety during periods of stress by being available, sensitive, and responsive (Shear & Shair, 2005). In adulthood, people form these reciprocal relationships with the ones they love, as each person offers the other a sense of belonging and support.

Mental representations of secure relationships develop based on both explicit and implicit memory (Shear, 2010). A person’s explicit memory uses the factual and narrative history of the relationship to predict how the person will act in the future. One’s implicit memory creates intuitive knowledge about the loved one.

When a loved one dies, the secure relationship is lost. Explicit memory Opens in new window easily assimilates to this new information; however, implicit memory Opens in new window requires repeated physical representation and learned predictions (rules) about the person and the attachment relationship (Shear, 2010).

Directly following a loss, explicit and implicit memories are at odds. When there is a mismatch between narrative experience and implicit, intuitive predictions or expectations about the relationship, people tend to disregard the experience instead of changing these predictions or expectations (Shear, 2010). This creates a sense of disbelief about the death. With separation in a close relationship, the attachment system is activated if reunion is possible.

In acute grief, before the loss is integrated into the implicit, mental representation of the relationship, yearning and emotional pain are heightened as the attachment system is activated attempting to seek reunion. There is a sense of internal disorganization, leading to symptoms such as disrupted sleep, attention, and concentration; physiological or emotional dysregulation; and difficulty with habitual tasks (Shear, 2010).

During the normal grieving process, the mental representation of the attachment relationship eventually changes to incorporate the loss of the loved one. In complicated grief (CG), this mental representation of the person and the attachment relationship does not fully incorporate the loss.

Instead, patients experience a persistent feeling of traumatic loss as they feel continued discord between their explicit memory of the loss and implicit representation of the loved one and their attachment relationship. This is hypothesized to contribute to the prolonged, intense, and distressing nature of grief in those with PCBD.

Diagnostic & Clinical Features

1. Signs and Symptoms

Grief is characterized by particular thoughts (e.g., preoccupation with the deceased), emotions (e.g., yearning), behaviors (e.g., behavioral deactivation), and physiological reactions (e.g., disturbed sleep; Shear et al., 2007).

For most individuals, grief lessens in frequency and intensity over time (Bonanno et al., 2002). However a subset experience complicating reactions (e.g., maladaptive beliefs, excessive avoidance) that stall recovery and prolong grief. Prolonged and severe grief symptoms, coupled with these complicating features, comprise the CG syndrome.

2. Cognitive

Intrusive thoughts of the deceased are common in CG. Intrusions may include positive memories of the deceased, memories of the death, images of the deceased’s last moments, and distressing images of the future. Maladaptive beliefs may also occur in CG, including negative views of the self (e.g., “I’m worthless”), life (e.g., “life is meaningless”), and the future (e.g., “the future is bleak”), as well as catastrophic interpretations of grief symptoms (e.g., “I’m going crazy”). These beliefs are considered maladaptive because they generate negative emotions and interfere with coping behaviors (Boelen, van den Bout, et al., 2006).

Individuals with CG may also engage in grief related rumination, which includes repetitive negative thinking about the loss and loss-related emotions (Eisma et al., 2015). Grief-related rumination may regard the injustice of the loss, ways the death could have been prevented, and/or difficulties with adjustment post-loss.

Individuals with CG also often report difficulty thinking about or planning for the future (Cozza et al., 2016). Experimental research indicates that individuals with CG have an impaired ability to imagine specific future events without the deceased, which may contribute to this sense of hopelessness. Repetitive thoughts about reunion with the deceased also occur.

3. Emotional

Yearning, pining, or longing for the deceased is a common emotional symptom of persistent complex bereavement disorder. The subjective experience of yearning is an intense, appetitive desire for reunion with the deceased (Robinaugh et al., 2016).

Among those with complicated grief (CG), self-reported yearning is correlated with neural activation in the nucleus accumbens, which is a region associated with reward processing (O’Connor et al., 2008). These pangs of emotional pain have been hypothesized to be analogous to the negative affective experience that accompanies physical injuries (MacDonald & Leary, 2005).

This hypothesis is supported by data indicating that grief reminders trigger activation in the dorsal anterior cingulated cortex, which is a region that active during physical pain processing (O’Connor et al., 2008).

Emotional pain is especially important to assess clinically, as it predicts both suicidal thoughts and behaviors among bereaved individuals (Robinaugh, 2017).

Loneliness, which serves as an emotional signal that one’s social supports are absent or unavailable, is another common symptom of CG (Meert et al., 2011). Loss can trigger loneliness if the deceased was a primary source of emotional or instrumental support for the bereaved, and may be exacerbated by maladaptive beliefs (e.g., “no one understands what I’m going through”).

Individuals with CG may also experience bitterness or anger related to the loss. Shock, disbelief, and emotional numbness are also common (Meert et al., 2011). Shock and disbelief sometimes manifest as a feeling of “unrealness” about the loss, which is described as the subjective sense that the deceased could return at any moment (Boelen, 2010). Finally, individuals with CG may report survivor guilt for being alive while their loved one has died, or they may feel guilt for some aspect of the death (Shear et al., 2007).

4. Behavioral

Excessive avoidance is a hallmark symptom of CG (Meert et al., 2011). Individuals with CG engage in avoidance to limit distressing emotions such as yearning and emotional pain (Shear et al., 2007).

While an ability to both approach and avoid the intensity of the loss can be adaptive in normal grief, when used inflexibly or excessively avoidance is thought to prevent acceptance of the loss and stall recovery (Shear et al., 2007).

Those with complicated grief (CG) might avoid reminders of the deceased (e.g., people, places, and activities), the loss (e.g., the deceased’ doctor, the final resting place), or death/illness (e.g., sick relatives, funerals).

Grief-related avoidance predicts functional impairment earlier and beyond CG symptom severity, as it restricts individuals’ behavior and limits opportunities for positive emotions (Shear et al., 2007).

Individuals with persistent complex bereavement disorder (PCBD) may also demonstrate excessive proximity seeking of reminders of the deceased as part of a desire for reunion (Meert et al., 2011).

They might linger over pictures/scrapbooks, wear the deceased’s clothing, or spend a great deal of time in rooms or other places associated with the deceased.

The pathological nature of proximity seeking is equivocal. An important distinction may be the function of the behavior (i.e., maintaining a connection to the deceased vs. avoiding acknowledging the reality of the loss), as well as the degree to which excessive proximity seeking interferes with other, adaptive behaviors that enable engagement in life without the deceased.

Behavioral deactivation is also observed among many individuals with CG. In one study, individuals with the disorder were less likely to engage in a variety of daily activities (e.g., socializing, eating meals, going outside, exercising, and doing work/house-work) than control participants (Monk et al., 2006). Individuals with CG experience disrupted daily rhythms, which can contribute to behavioral deactivation and reduced opportunities for positive reinforcement.

5. Physiological

Individuals with persistent complex bereavement disorder (PCBD) also report physiological symptoms that contribute to distress and impairment. Sleep quality is typically poor, especially among patients with comorbid depression or bipolar disorder.

Dreams of the dead may also be prominent, particularly in some cultures (Bryant, & Simon, 2013). Physiological distress is also common in response to reminders of the deceased and the loss.

In one study, 40% of patients with the disorder reported at least one full or limited symptom grief-related panic attack within the past week (Bui, Horenstein, et al., 2015). The majority of patients who experienced grief-related panic attacks found them distressing and reported anticipatory anxiety about having more attacks. More research is needed to understand the physiological underpinnings of CG.

Treatment

1. Complicated Grief Therapy

For the majority of bereaved individuals, treatment is unnecessary. Over time, a natural recovery process occurs and individuals are able to continue on with their lives unassisted. However, for bereaved individuals who meet criteria for CG, an empirically supportive psychotherapy is available.

Complicated grief therapy (CGT) is a 16-session manualized weekly treatment designed to specifically target symptoms of CG. CGT integrates an attachment model and cognitive-behavioral therapy (CBT) components and focuses on both grief and restoration strategies designed to assist in the natural recovery process following loss (Shear, 2010; Stroebe & Schut, 1999).

Grief strategies include revisiting the memory of the death as well as exposure to painful reminders of the deceased that have previously been avoided. These strategies increase tolerance of the distress associated with these memories and reminders and help the patient make peace with a painful reality and accept the finality of the death.

The restoration strategies target goals and aspirations for the short and long term to help the patient envision a life without the deceased that allows for joy and satisfaction. Restoration also includes increasing pleasurable and rewarding activities.

Numerous randomized controlled trials support the effectiveness of CGT for treatment of CG (Shear et al., 2005). In a randomized controlled trial examining the efficacy of CGT compared to interpersonal therapy (N = 83), Shear and colleagues (2005) found that participants randomly assigned to CGT showed a significantly higher response rate and a significantly faster time to response compared to those receiving interpersonal therapy.

A second study by Shear and colleagues (2014) examined the efficacy of CGT compared to interpersonal therapy in a population of older adults. (N =151) (a population vulnerable to CG). Researchers found that twice as many people responded to CGT compared to interpersonal therapy. Furthermore, CGT led to greater symptom reduction, greater change in illness severity, and greater rate of improvement in impairments related to CG (Shear et al., 2014).

CGT has also been shown to be more efficacious than the antidepressant citalopram in treating CG symptoms (Shear et al., 2016). In a study examining CGT versus citalopram, participants (n = 395) received either citalopram (n = 101), placebo (n = 99), CGT with citalopram (n = 99), or CGT with placebo (n =96). Results revealed that the addition of citalopram did not significantly improve CGT outcome such that the response rate of CGT + placebo versus CGT + citalopram was not significantly different and the majority improved in both treatment conditions.

In addition, suicidal ideation was substantially more improved among participants receiving CGT than among those who did not. However, CGT with the addition of citalopram showed a greater decrease in depressive symptoms compared to CGT+ placebo. Therefore, if a patient is experiencing co-occurring depressive symptoms, supplementing therapy with citalopram could be a beneficial option.

2. Cognitive-Behavioral Therapy

There is emerging evidence that CBT adapted to target grief that specifically includes an exposure component may be efficacious in treating CG.

Bryant and colleagues (2014) examined if a group CBT for grief supplemented with four individual sessions of exposure therapy (relieving the experience of the death of their loved one) was more effective than group CBT supplemented with four individual sessions of supportive.

The patients who received the exposure therapy showed greater reductions in CG symptoms, depression, negative appraisals, and functional impairment. These results suggest that exposure sessions that focus on the death help reduce grief symptoms (Bryant et al., 2014).

3. Pharmacotherapy for CG

Research on the effectiveness of pharmacotherapy to treat CG is emerging. Several studies suggest that antidepressants can relieve depressive symptoms that are related to bereavement; however, the effect on grief severity appears to be less robust (Reynolds et al., 1999; Shear et al., 2016).

For instance, in a sample of bereaved individuals with major depression treated with bupropion, Zisook and colleagues (2001) found a significant response in reducing depression; grief severity decreased but the effects was not as strong.

Other research suggests the use of antidepressants in enhancing outcomes for individuals in CGT. In an examination of naturalistic data on combining antidepressants with CGT, Simon et al. (2008) found that those who remained on antidepressants were less likely to drop out of CGT.

In addition, Simon and colleagues found that those in CGT who were concurrently on antidepressants showed a higher response rate compared to those who were not receiving concomitant antidepressant medication. However, as noted, antidepressant effects were not robust when compared to CGT alone or in combination with CGT (Shear et al., 2016), and more research is needed to determine whether other medication approaches may be effective or not.