Key Takeaways
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.
“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 theDiagnostic 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.
Differences Between Normal and Complicated Grief
“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?
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.”
What Is Anticipatory Grief?
A diagnosis of prolonged grief disorder may be particularly helpful for these individuals for three major reasons:
Symptomsof 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).
Defining Grief
It can be difficult to imagine grief as measurable. However, grief patterns and categories, whichresearchers have recordedover the years, may help us understand the often overwhelming experience.
Outside the mainstream American psychiatric space, it may also be helpful to open up the concept of grief. Sarah Epstein, BA, a peer facilitator withThe 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 includecomplicated 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.
How Grief Is Different During COVID-19
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.”
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.”
“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.”
What This Means for YouIf you or someone who know is grieving and may be interested in receiving help, talk to a mental health professional about your options. They should be able to review the criteria for prolonged grief with you and evaluate treatment options.
What This Means for You
If you or someone who know is grieving and may be interested in receiving help, talk to a mental health professional about your options. They should be able to review the criteria for prolonged grief with you and evaluate treatment options.
7 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.American Psychiatric Association.APA offers tips for understanding prolonged grief disorder.Facts aboutDSM-5-TR.Psychiatr News. 2022;57(3). doi:10.1176/appi.pn.2022.03.3.28National Cancer Institute.Grief, bereavement, and coping with loss (PDQ)–health professional version.Szuhany KL, Malgaroli M, Miron CD, Simon NM.Prolonged grief disorder: course, diagnosis, assessment, and treatment.Focus (Am Psychiatr Publ). 2021;19(2):161-172. doi.org/10.1176/appi.focus.20200052Gang J, Kocsis J, Avery J, Maciejewski PK, Prigerson HG.Naltrexone treatment for prolonged grief disorder: study protocol for a randomized, triple-blinded, placebo-controlled trial.Trials. 2021;22(1):110. doi:10.1186/s13063-021-05044-8Johnson JG, First MB, Block S, et al.Stigmatization and receptivity to mental health services among recently bereaved adults.Death Stud. 2009;33(8):691-711. doi:10.1080/07481180903070392Lichtenthal W, Maciejewski P, Craig Demirjian C, et al.Evidence of the clinical utility of a prolonged grief disorder diagnosis.World Psychiatry. 2018;17(3):364-365. doi:10.1002/wps.20544
7 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.American Psychiatric Association.APA offers tips for understanding prolonged grief disorder.Facts aboutDSM-5-TR.Psychiatr News. 2022;57(3). doi:10.1176/appi.pn.2022.03.3.28National Cancer Institute.Grief, bereavement, and coping with loss (PDQ)–health professional version.Szuhany KL, Malgaroli M, Miron CD, Simon NM.Prolonged grief disorder: course, diagnosis, assessment, and treatment.Focus (Am Psychiatr Publ). 2021;19(2):161-172. doi.org/10.1176/appi.focus.20200052Gang J, Kocsis J, Avery J, Maciejewski PK, Prigerson HG.Naltrexone treatment for prolonged grief disorder: study protocol for a randomized, triple-blinded, placebo-controlled trial.Trials. 2021;22(1):110. doi:10.1186/s13063-021-05044-8Johnson JG, First MB, Block S, et al.Stigmatization and receptivity to mental health services among recently bereaved adults.Death Stud. 2009;33(8):691-711. doi:10.1080/07481180903070392Lichtenthal W, Maciejewski P, Craig Demirjian C, et al.Evidence of the clinical utility of a prolonged grief disorder diagnosis.World Psychiatry. 2018;17(3):364-365. doi:10.1002/wps.20544
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
American Psychiatric Association.APA offers tips for understanding prolonged grief disorder.Facts aboutDSM-5-TR.Psychiatr News. 2022;57(3). doi:10.1176/appi.pn.2022.03.3.28National Cancer Institute.Grief, bereavement, and coping with loss (PDQ)–health professional version.Szuhany KL, Malgaroli M, Miron CD, Simon NM.Prolonged grief disorder: course, diagnosis, assessment, and treatment.Focus (Am Psychiatr Publ). 2021;19(2):161-172. doi.org/10.1176/appi.focus.20200052Gang J, Kocsis J, Avery J, Maciejewski PK, Prigerson HG.Naltrexone treatment for prolonged grief disorder: study protocol for a randomized, triple-blinded, placebo-controlled trial.Trials. 2021;22(1):110. doi:10.1186/s13063-021-05044-8Johnson JG, First MB, Block S, et al.Stigmatization and receptivity to mental health services among recently bereaved adults.Death Stud. 2009;33(8):691-711. doi:10.1080/07481180903070392Lichtenthal W, Maciejewski P, Craig Demirjian C, et al.Evidence of the clinical utility of a prolonged grief disorder diagnosis.World Psychiatry. 2018;17(3):364-365. doi:10.1002/wps.20544
American Psychiatric Association.APA offers tips for understanding prolonged grief disorder.
Facts aboutDSM-5-TR.Psychiatr News. 2022;57(3). doi:10.1176/appi.pn.2022.03.3.28
National Cancer Institute.Grief, bereavement, and coping with loss (PDQ)–health professional version.
Szuhany KL, Malgaroli M, Miron CD, Simon NM.Prolonged grief disorder: course, diagnosis, assessment, and treatment.Focus (Am Psychiatr Publ). 2021;19(2):161-172. doi.org/10.1176/appi.focus.20200052
Gang J, Kocsis J, Avery J, Maciejewski PK, Prigerson HG.Naltrexone treatment for prolonged grief disorder: study protocol for a randomized, triple-blinded, placebo-controlled trial.Trials. 2021;22(1):110. doi:10.1186/s13063-021-05044-8
Johnson JG, First MB, Block S, et al.Stigmatization and receptivity to mental health services among recently bereaved adults.Death Stud. 2009;33(8):691-711. doi:10.1080/07481180903070392
Lichtenthal W, Maciejewski P, Craig Demirjian C, et al.Evidence of the clinical utility of a prolonged grief disorder diagnosis.World Psychiatry. 2018;17(3):364-365. doi:10.1002/wps.20544
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