Prolonged grief disorder recognized as official diagnosis. Here's what to know about chronic mourning.

With the United States surpassing 727,000 deaths from covid-19, the disease caused by the coronavirus, millions have been left grieving the losses of their loved ones. As a psychologist, I bear witness to the emotional and physical pain, sadness, anger, fear, isolation and struggle of those who mourn. They often feel like there is a wall between them and the rest of the world, like our accelerated, progress- and positivity-centered society does not allow for grieving and honoring the deceased.

The pandemic has made things worse, with relatives barred from supporting the dying, and religious and cultural mourning rituals disrupted or impossible. “In the current environment, we are likely to see more people whose grief doesn’t lessen with time, and whose intense suffering disrupts their ability to function,” said Holly Prigerson, professor of sociology in medicine at Weill Cornell Medical College in New York City, and a co-author of “Bereavement: Studies of Grief in Adult Life.”

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Prigerson’s studies over the past three decades, along with other research from the United States, the United Kingdom, the Netherlands and Australia, among others, have led to the inclusion of a new disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) – the main guide for diagnosing mental health problems. The American Psychiatric Association recently announced that prolonged grief disorder (PGD) will be added to the newest version of the manual, DSM-5-TR.

Here is what you need to know about prolonged grief disorder.


—What is prolonged grief disorder?


Grief is a natural human reaction to the death of a loved one. It tends to come in waves, often triggered by internal or external reminders of the loss – that’s why anniversaries or holidays can be particularly difficult. It is also idiosyncratic, hence the maxim that there is no one right way to grieve. For some people, talking a lot about the deceased is healing, while others benefit from more interior mourning.

Related video: Families search for closure amid COVID deaths

While most people have a hard time after a death, over time they are able to accept the loss, find meaning in life without the deceased and reintegrate into society. They find new ways to love and work.

“But for a small but significant group of people, grief doesn’t resolve. It is ongoing, pervasive, intense and debilitating,” said Katherine Shear, professor of psychiatry at the School of Social Work and founding director of the Center for Complicated Grief at Columbia University. “This is what we call prolonged grief disorder.”

PGD can be diagnosed no sooner than one year after the death of a loved one, and it is defined by a daily, intense yearning for the deceased or a preoccupation with thoughts or memories of them. Additional symptoms – three of which are required for a diagnosis – are identity confusion, disbelief, avoidance of reminders of the loss, intense emotional pain, difficulty engaging with others and with life, emotional numbness, feeling that life is meaningless, and intense loneliness.

Although PGD is newly designated as a disorder, similar conditions have been documented and investigated for many years, usually called “complicated grief.”


—Why is it important to recognize prolonged grief disorder?


About 1 in 10 people who have lost someone struggle with PGD. Until now, many of them might have wondered what was wrong with them and whether they could get better. “People ask us, ‘Am I going crazy?’ all the time, and having PGD recognized will validate their suffering and show them there are others suffering in a similar way,” said Natalia Skritskaya, a clinical psychologist and associate research scientist at Columbia’s Center for Complicated Grief.

Although PGD shares some symptoms with depression and post-traumatic stress disorder (PTSD), it is “neurobiologically and epidemiologically different,” Prigerson said. “It has a distinct pattern of symptoms and different treatments.”

PGD puts people at higher risk for medical problems (cancer, high blood pressure, heart or immunological issues), other mental health disorders, disability, hospitalization and suicide. The DSM classification will help health-care professionals identify those who suffer from PGD so that they can properly help them.

All the while, we need to be careful not to pathologize grief. “We run a risk of stigmatizing the grieving, reducing their dignity and medicalizing the natural process,” said Allen Frances, a professor and chairman emeritus of the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine and the author of “Saving Normal.” “Some practitioners, especially in primary care after a 10-minute visit, might overuse the new label, over-diagnose and overprescribe.”

So, always ask questions and advocate for yourself or your loved ones if you feel like medical providers are not taking time to listen and understand.


—What makes people more susceptible to PGD?


Research has identified several factors that complicate grief. If you were very dependent on the deceased for practical or emotional needs, or if your world revolved around them, the loss can be hard to process. On the other hand, difficulty remembering positive traits of the deceased can also prolong grief.

“Sudden and traumatic deaths, and deaths by suicide, are more likely to lead to complicated grief,” Skritskaya said. “If the grieving person is dealing with multiple losses, poor social support, has a lot of stress in their life, or a history of psychological disorders or prior trauma – those are risk factors, too.”

Also likely to worsen grief: chronically avoiding thinking about the loss; or getting stuck in a ruminative cycle asking why this has happened to you, or wondering whether you could have done something different. Judging oneself for experiencing negative emotions related to grief is not helpful either.


—What are the treatments?


Treatments for complicated grief have been investigated since the late 1990s and practiced for much longer. “Research showed that neither antidepressants nor standard depression-focused therapy are very effective for complicated grief,” Shear said. “That’s why we developed complicated grief treatment.”

Shear’s integrative treatment helps patients understand and accept grief, manage emotions, strengthen relationships, create a coherent story of the death, live with reminders and feel connected with people who died, and begin to see a promise in the future. It was shown to help a majority of people with PGD.

Robert Neimeyer, professor emeritus of psychology at the University of Memphis, director of the Portland Institute for Loss and Transition and co-editor of “Grief and Bereavement in Contemporary Society,” finds that the most important goals of complicated grief therapy are to develop a narrative of what happened, to revise and re-create one’s relationship with the loved one, and to reinvent oneself. “After loss, we need to reconstruct life meaning and find a way to reinvest in living,” he said.

A 2014 Australian study found that grief-focused cognitive behavior therapy helped those with PGD. The therapy included noticing thinking traps that get us mired deeper in grief, gradually approaching previously avoided situations that had reminders of loss, and scheduling social and other enjoyable activities. A version of this treatment that also focused on recurrent vivid recounting of how the loved one died was particularly effective.

And I have found that, in situations in which PGD is related to guilt, regret or a sense of unfinished business with the deceased, writing a letter or having an imagined conversation with the lost loved one can be a powerful aspect of treatment.

While psychotherapy is a first-line treatment for PGD, antidepressants can be helpful with the depression that often accompanies complicated grief. Grief support groups are also recommended, especially when they involve mourners with similar grief stories.

Finally, the websites of Columbia’s Center for Complicated Grief and Cornell’s Center for Research on End-of-Life Care provide assessment, education, self-help and other resources for dealing with grief and PGD.

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Jelena Kecmanovic is the founding director of the Arlington/DC Behavior Therapy Institute and an adjunct professor of psychology at Georgetown University. 

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