Prolonged Grief Disorder Is Now Recognized as a Medical Condition

The American Psychiatric Association (APA) recently added a new diagnosis—prolonged grief disorder—to its official psychiatric diagnostic handbook. The condition can be diagnosed when grief remains intense for more than a year after losing someone close and interrupts your ability to live other aspects of life.

Grief is a natural process that most people will experience. But the folks who may be helped by a diagnosis of prolonged grief disorder, Holly Prigerson, PhD, professor of sociology in medicine at Weill Cornell Medicine, told Verywell, are particularly debilitated by their grief.

“We are identifying a small subset of mourners who are ‘stuck’ in a chronically intense, disturbingly disruptive grieving state,” she said via email.

The APA also noted in the Diagnostic and Statistical Manual of Mental Disorders (DSM) that the addition of prolonged grief disorder was not meant to pathologize grief or treat it as abnormal or unhealthy. Rather, Prigerson said, the data is irrefutable: We need to identify the small percentage of people who are suffering from prolonged grief and would likely benefit from specific treatment interventions.

“No one who has reviewed the international evidence gathered from thousands of grieving people, across circumstances of the death and kinship relationships to the deceased, would doubt the severe distress [and] risk of mental and physical impairment associated with these symptoms,” she said.

What Is Prolonged Grief?

To the APA, prolonged grief happens after losing someone close, and is characterized by:

• A persistent and debilitating grief response lasting longer than cultural norms: at least 12 months for adults or six months for children and adolescents
• Symptoms that significantly interrupt day-to-day functioning
• Experiences that can’t be attributed to another condition, such as major depressive disorder (MDD) or post-traumatic stress disorder (PTSD)
  

While most grief is thought to grow less intense one to two years following the loss, research shows that 15%–30% of people experience chronic or “complicated” grief for longer. It can also start to look like major depression, generalized anxiety, and post-traumatic stress.

Prigerson said that estimates for prolonged grief disorder are much lower, though. She and colleagues have combed through data of thousands of bereaved individuals, and learned that only about 3% of people who were grieving others whose deaths were expected (like a terminal illness) or not unexpected due to old age “will have the threshold levels that put them at serious risk and whose distress is unlikely to resolve over time and with standard treatments for depression.”

A diagnosis of prolonged grief disorder may be particularly helpful for these individuals for three major reasons:

1. To distinguish prolonged grief from other conditions like major depression and PTSD
2. Offer potentially life-saving treatment specific to prolonged grief
3. Relieve suffering

Symptoms of prolonged grief disorder may include emotional numbness, intense loneliness, avoidance of reminders that the person is dead, and identity disruption (or feeling that part of the self has died).

This contrasts with depression and other disorders in various ways. For example, grief tends to be characterized by emptiness, whereas major depression tends to center around depressed mood and anhedonia, or lowered ability to feel pleasure or happiness.

Defining Grief

It can be difficult to imagine grief as measurable. However, grief patterns and categories, which researchers have recorded over the years, may help us understand the often overwhelming experience.

Grief has been defined as an “emotional/affective process of reacting to the loss of a loved one through death.” It might present itself as numbness, deep sorrow, anxiety, anger, and/or distress. Grief and the practices around it, or mourning, vary by culture.

Outside the mainstream American psychiatric space, it may also be helpful to open up the concept of grief. Sarah Epstein, BA, a peer facilitator with The Dinner Party, a platform for grieving 20- to early 40-year-olds, told Verywell that grief doesn’t have to just mean feeling sorrowful. For some, she said, it can look like relief. For others, guilt or anger.

“It’s just more complicated. I don’t know that one sentence can express everyone’s experience,” she said. “But I will say that [grief] is the emotional mood and affective experience that one has after experiencing the loss of someone that they knew.”

Treating Prolonged Grief

Prigerson said that connecting folks with prolonged grief disorder to treatment is urgent for multiple reasons. Not only will it offer a different opportunity to relieve suffering, but potentially work to alleviate other health risks.

“We have shown prolonged grief disorder is associated with a significantly elevated risk of suicidal thoughts and behaviors, hospitalization for accidents and other medical conditions such as heart attack and even associated with the incident cases of cancer,” she said. “To ignore these findings is to ignore the adverse effects of this condition on both mental and physical health.”

Treatment for prolonged grief may include complicated grief treatment (CGT), which is similar to cognitive behavioral therapy (CBT).

Other sources of treatment may come from support groups and certain medications. Prigerson added that some of her research began when she noticed that certain traditional antidepressant treatments did not help resolve the symptoms of prolonged grief disorder. Because of that, they’re piloting another drug called naltrexone, which is usually used to treat alcohol or opioid use disorder.

“Anecdotally, we found it was very helpful to get widowed persons with prolonged grief disorder to get out of the house and open them to the possibility of a renewed sense of meaning and wellness,” she added.

Before prolonged grief disorder was officially added to the DSM, Prigerson and colleagues conducted a study to see how bereaved individuals would feel if they were to receive such a diagnosis.

“What we found is that more than 90% of the respondents who met criteria for a diagnosis of prolonged grief disorder, ‘reported that they would be relieved to know that having such a diagnosis was indicative of a recognizable psychiatric condition,’” she said, citing the study. And 100% of study participants—all the 135 widowed patients—reported that they would be interested in receiving treatment for their severe grief symptoms.

“These results suggest that bereaved individuals who meet criteria for prolonged grief disorder are relieved to learn that there is a disorder to describe their plight and potentially identify effective treatments for it,” she added.

In addition, Prigerson and colleagues also investigated how mental health professionals considered the prolonged grief diagnosis and used it in treatment. “We found that clinicians provided with information about prolonged grief disorder, compared to those not receiving such information, were 4.5 times more likely to diagnose it accurately,” she said.

When they followed up with the clinicians, they also found that 95% found it “overall clinically useful.”

Criteria were also helpful, they found, in distinguishing prolonged grief disorder symptoms from those of PTSD and depression. “The proposed prolonged grief disorder criteria are highly specific, which should reduce the risk of pathologizing normative grief reactions. At the same time, they are sufficiently sensitive to capture those in need,” the authors wrote.

Finding Support and a Community

If only 3% meet the criteria for prolonged grief, then 97% of people who grieve will not need to worry about the diagnosis. But grief is near-universal, and possibly more commonly shared since COVID-19 began. Some call it the “grief pandemic.”

Epstein added that grief groups can offer a refuge for anyone dealing with grief. “Asking someone to show up to something, to bring a dish or just their bodies, forces them to show up to something other than their own mood/affect state,” she said. “So it can be helpful to transition someone into a post-loss space.”

When Epstein lost her father three years ago, she did not feel that she was “stuck” in the ways that some with prolonged grief are. A month after he passed, she was working, seeing friends, and getting back to daily life in many ways. But a year and a half after he passed, she wanted to find a different place to work with her grief.

“Having the bedrock of my family and home life pass was still affecting me in different ways,” she said. “So although I was ‘functional,’ I was still grieving, and that’s why I decided to join this grief group.”

That’s when Epstein got in touch with The Dinner Party, a platform for people grieving who are between 18 years old and their early 40s. “The point of having a space for ‘young’ people is that you’re not supposed to experience death at that age,” she said. “There’s this idea that your parents, friends, or the people in your life don’t start dying until you’re ‘old enough’ to handle it.”

In her experience being in and hosting grief groups, Epstein added that “people come in as themselves, so they all have their own issues and mental health struggles that may be exacerbated by grief.”

Groups may help to normalize and support whatever process they’re going through. Although little systematic research has been done on grief groups, past studies have found that many seek them out and that they may help relieve the intensity of acute grief in particular.

“Also it’s just soothing to be seen and to see, to witness someone, which is what peer support is ultimately about,” Epstein added. “Since grief is a human experience and not a pathology or disease, we can witness each other without it being more than that.”

To Epstein, groups can offer what the separation and emptiness caused by grief might exactly need: community.

“It’s inviting the person to come back into the world, reintegrating into a community in a way that asks you to be accountable to a life outside of loss without having to hide the pain of what you are feeling,” she said. “It might not work, but it’s an effort nonetheless.”