Persistent Complex Bereavement Disorder
Overview
Grief after death is common, as death is a part of human existence. Every person experienced grief differently. Some people have complicated grief, others may experience a stress disorder after losing a loved one, and some people live with prolonged grief disorder. Often, people who grieve can reconnect with society and feel joy, even after a significant loss. However, 10% to 20% of people have difficulties that persist rather than diminish. This can sometimes be called persistent grief disorder or complicated grief disorder.
Experiencing grief after death is a normal response, making it difficult to determine when someone is having difficulty adjusting. The core element of persistent complex bereavement disorder (PCBD), listed in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), is a persistent yearning for the deceased or a preoccupation with the circumstances of their death. Destructive thoughts and behaviors often accompany these feelings for the bereaved.
Distinguishing prolonged grief disorder or PCBD from other reactions to grief can be challenging. The primary distinction between PCBD and depression is how PCBD symptoms relate to losing the deceased and how they are listed in the Diagnostic and Statistical Manual of Mental Disorders. For example, someone with depression may engage in social withdrawal, while someone with PCBD may avoid multiple areas of life not to be reminded of the deceased.
PCBD and post-traumatic stress disorder (PTSD)1 can have many features in common, including a sense of being shocked or stunned, scary thoughts, emotional numbness, detachment from others, avoiding reminders of grief or loss, intense emotions, and significant functional impairments. However, those with PTSD may have intruding thoughts about the traumatic event and experience triggers that exacerbate symptoms. PCBD intrusions may be about the deceased, and they can be caused by reminders of loss. People with PCBD often do not experience the hyperarousal of those with PTSD unless they have a co-occurring diagnosis.
Symptoms
According to the American Psychiatric Association, each person may have a unique experience with persistent complex bereavement disorder (PCBD) or complex grief, and symptoms can vary. However, some of the common symptoms of persistent bereavement outlined by the American Psychiatric Association to look out for include the following:
- Persistent yearning for the deceased
- Intense sorrow and emotional pain in response to the death
- Preoccupation with the circumstances of the deceased’s death
- Disbelief or emotional numbness
- Difficulty accepting death
- Difficulty with positive reminiscing due to emotional pain
- Bitterness or anger
- Self-blame or other maladaptive self-appraisals about oneself concerning the death or deceased
- Excessive avoidance of reminders of the loss
- Desire to be with the deceased
- Difficulty trusting other people
- A sense of being alone or detached from other people
- Believing life is empty or meaningless without the deceased or that one cannot function without the deceased
- A diminished sense of identity after the loss or confusion about one’s role
- Difficulty or reluctance to pursue interests or plan for the future after the loss
- Clinically significant distress or impairment in occupational, social, or other areas of functioning
- Comorbid2 mental health disorders, such as PTSD
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) also states that the bereavement must be out of proportion or inconsistent with religious or cultural norms and that some of these symptoms of intense grief must persist in the long term and impact daily life for at least 12 months after the death. The death of the loved one must have occurred at least six months previously for the grief symptoms to be related to the death, according to the Diagnostic and Statistical Manual of Mental Disorders.
According to the Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association, complex grief may cause physical symptoms and other health challenges after the death of a loved one, including but not limited to the following:
- High blood pressure
- Elevated heart rate
- Headaches
- Heart disease
- Poor quality of life
Causes
Doctors are unsure what causes PCBD or complex grief, but recent research indicates that the effects of grief on the body are complex. For example, cardiovascular biomarkers show consistent changes between people experiencing acute and chronic grief, which can cause physical symptoms like elevated heart rate and high blood pressure.
The study also found that grief is a complex emotional state. During the grieving process, multiple regions in the brain are activated, including those involved in emotional processing, episodic memory retrieval, processing of familiar faces, visual imagery, and the coordination and modulation of these functions.
Once these regions were identified, the study compared the response of those with complicated grief to those who were adapting well and identified a single area responding differently. People experiencing complicated grief experienced more activity in a part of the basal ganglia called the nucleus accumbens, which is involved in the brain’s reward pathway.
According to the study, romantic and parental love also activate this part of the brain. For people with uncomplicated grief risk factors, the activation in this part of the brain in response to reminders of the deceased may diminish over time. For those with PCBD, it may remain high. This research indicates that PCBD or complicated grief may be linked to the idea that wanting and yearning for the deceased activates a part of the brain’s reward center, but more research is needed to understand the intense emotional connections related to this mental illness.
Treatments
The symptoms of PCBD are manageable, but people will respond to treatments in different ways. Here are some of the treatments available for PCBD or complicated grief.
Therapy for managing complex grief
Recent research shows that cognitive-behavioral therapy (CBT)3 is effective for treating complex grief, with some researchers finding that CBT with exposure therapy was more effective than cognitive-behavioral therapy alone. The effectiveness of exposure therapy might help people process the emotional memories of the death. The approach used in exposure therapy may vary, but some therapists use it to help someone with complex grief reduce avoidance of the reminders and memories of the deceased.
Models of cognitive-behavioral therapy used for PCBD and complex grief may target maladaptive beliefs and practice adaptive thinking to reorganize their lives while maintaining bonds with the deceased and improving their ability to function. Recent research also shows that cognitive-behavioral treatment for complex grief may be more effective than other types of therapy, including interpersonal therapy.
Medication
Although persistent complex bereavement disorder is not the same entity as depression, the two conditions can co-occur. Antidepressant medication may work for some people with PCBD if they also have depression.
Some recent research compared the benefits of using an antidepressant in conjunction with therapy. Scientists found that the antidepressant medication did not improve outcomes for people participating in CBT for complex grief. However, when studying antidepressants without therapy, scientists did find that antidepressants led to a significant improvement in people who had a comorbid diagnosis of major depressive disorder4 at baseline.
Consult a medical doctor before starting, changing, or stopping a medication for any condition. The information in this article is not a replacement for medical advice or diagnosis.
Self-care
Self-care may not cure or stop grief, but recent research shows that self-care can improve mental health, which can be beneficial for people experiencing PCBD. Below are several tips to practice self-care:
- Get regular exercise: Aim to get 30 minutes daily, but you can break this time into shorter sessions. You could break up this time by taking two 15-minute walks a day.
- Eat healthy: Eat regular, well-balanced meals.
- Stay hydrated: Avoid caffeinated drinks like coffee and soda. In addition, avoid excessive or frequent alcohol drinking.
- Prioritize sleep: Try to stick to a regular bedtime routine and aim for at least seven hours every night.
- Partake in calming activities: Make time for relaxing activities, like meditation, journaling, breathing exercises, or yoga.
- Practice gratitude: Grieving can be painful, and pessimistic thoughts may arise. However, gratitude practices, like a gratitude journal, may help you focus on what you have to be appreciative of in your life.
- Stay connected: Stay connected to friends and family and ask for help when needed. You might also consider support groups to reach out to others experiencing challenges with their grief.
Resources
Studies show that therapy, specifically CBT focused on complex grief and exposure therapy, is effective. Online therapy through a platform like BetterHelp may be a valuable choice for people with PCBD as they can attend from home. Other resources can include the following:
- GriefShare is an online community where you can find a grief support group in your area and sign up for a meeting. You can also sign up to join its online community, receive daily encouraging emails, and visit its online bookstore.
- Grief Recovery After a Substance Passing (GRASP) offers a way to get support for those who have lost someone due to substance use. You can find information about local support groups, resources about meditation, and related books and journals on their website.
- If you or someone you love has experienced loss because of a drunk or impaired driver, Mothers Against Drunk Driving (MADD) has resources to help survivors cope.
For help with substance use, contact SAMHSA’s National Helpline at 1-800-662-HELP (4357).
Please see our Get Help Now page for more immediate resources.
Research
There is some controversy about the necessity of establishing a persistent complex bereavement disorder diagnosis, and some researchers have questioned it.
Differences between various disorders
One recent analysis suggested that there is no difference between prolonged grief disorder (PGD), complex grief (CG), and PCBD and that the distinctions between them come down to semantics. Looking at the diagnostic criteria behind each of these ways of handling grief, these researchers concluded that PGD, CG, and PCBD are all similar. However, these diagnostic labels remain separate in the DSM-5.
Another study questioned whether complex grief (CG) is a psychiatric disorder. The American Psychological Society started considering CG a psychiatric disorder when the DSM-5 was published in 2013 when it was renamed PCBD. The reasoning for this is five-fold:
- The symptoms of CG are outside of the usual scope of grief.
- The symptoms of CG differ from responses to other stressors and other mental disorders.
- People experience CG across cultures and nations.
- CG responds to therapy.
- A diagnosis of CG was beneficial to some as knowing their condition has a name and treatment brought people relief.
Some aspects of the diagnosis criteria for PCBD have been debated precisely because there was no evidence that the 12-month time required for the diagnosis is useful for distinguishing complex grief from other grief. Some of this research shows that diagnostic criteria for CG were more accurate than those for PCBD. Still, others question if complex grief has a high false positivity rate and pathologized normal grief.
Statistics
Below are several statistics about persistent complex bereavement disorder:
- Persistent complex bereavement disorder affects between 10% and 20% of people grieving the loss of a loved one.
- Some recent studies show that the prevalence of complex grief is significantly higher following traumatic events, affecting 22% of those grieving someone due to homicide and 43% of those grieving someone lost in a terrorist attack.
- Complex grief like PCBD can occur with other mental health disorders. One study found that 84.5% of people with complex grief had a comorbid condition, the most prevalent being depression, which affected 71.8%.
- A recent study found that, at a six-month follow-up, 96.4% of people treated with CBT for complicated grief and 96.4% of people treated with CBT for complicated grief and an antidepressant maintained the benefits of treatment.