Prolonged grief disorder (ICD-11, DSM-5-TR)
Grief that stays intense and disabling long after a death, with daily longing for the person or preoccupation with them. DSM-5-TR asks for at least 12 months since the death in adults (6 months in children and adolescents) and at least three of eight symptoms nearly every day for the last month, such as feeling part of oneself has died, disbelief, avoiding reminders, emotional numbness, intense loneliness or life feeling meaningless. ICD-11 sets at least 6 months, and both ask that the grief clearly go beyond the person’s cultural and religious norms and impair daily life.
What drives it
The label separates a grief that has stalled from the many griefs that hurt for a long time and still move. For identification it gives a person and their doctor words for ‘it feels like the first month, and it’s been two years’, and points to treatments built for grief rather than for depression.
How it shows
Work
Unable to return to the job, or back at the desk and unable to concentrate, a year and more after the death. Turning down promotions or moves because ‘nothing matters now’.
Relationships
The person’s room left untouched for years and nobody allowed in. Pulling away from friends who ‘have moved on’. Feeling unable to trust or get close to anyone since the death.
Self
Notice whether the longing is as strong each day as in the first months, whether you avoid every reminder or can think of little else, and whether life since the death feels like it has stopped.
What tells it apart
Major depression: Depression brings low mood and loss of pleasure across most of life, often with self-blame. In prolonged grief the pain centers on the person who died, and longing for them may be the core, though the two often occur together.
Post-traumatic stress disorder (PTSD): After a sudden or violent death, PTSD may be the better fit if fear, intrusive images of how it happened and being on guard lead. Prolonged grief centers on yearning and missing the person.
Chronic sorrow and nonfinite loss (Olshansky): Chronic sorrow returns around a living, ongoing loss, set off by milestones, and moves between sorrow and ordinary days. Prolonged grief follows a death and stays intense almost every day.
A test
Ask how long it has been since the death and whether the longing or preoccupation has come nearly every day this past month, with life still on hold. Twelve months or more of that, beyond what the person’s family and culture would expect, may point to prolonged grief, which a clinician trained in grief can assess.
Questions to carry
- On the day I most expected to feel lighter, what kept pulling me back to them?
- What have I stopped doing since the death that I have not let myself start again?
Go deeper
- Read: The Other Side of Sadness, George A. Bonanno, 2009, revised 2019. Written for readers by a psychologist who has followed bereaved people for years. He questions the idea that grief moves through set stages and argues that most people come through a loss with more resilience than expected. Much of it rests on his own group's studies.
- Study: Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis, Marie Lundorff, Helle Holmgren, Robert Zachariae, Ingeborg Farver-Vestergaard and Maja O'Connor, Journal of Affective Disorders, 2017. Pooled 14 studies of adults bereaved by deaths that were not violent and found about 1 in 10 had prolonged grief disorder (9.8%). Older age went with higher rates. The studies differed widely and few looked at who declined to take part, so the authors ask for caution. The accepted manuscript is free to read.
How strong the research is
strong. A meta-analysis of 14 population-based studies (Lundorff and colleagues, Journal of Affective Disorders, 2017) put the rate at about 9.8% of adults bereaved by non-violent deaths, with wide differences between studies that the authors said call for caution. Prigerson and colleagues validated the DSM-5-TR criteria and the PG-13-R scale in 2021. In a JAMA trial (Shear and colleagues, 2005), complicated grief treatment reduced symptoms more and faster than interpersonal therapy. ICD-11 and DSM-5-TR still set different time thresholds, so the same person can meet one and not the other.
Where it comes from
Holly Prigerson and colleagues, Inventory of Complicated Grief, 1995, and criteria proposed for DSM-5 and ICD-11, 2009. Added to ICD-11 as 6B42 by the World Health Organization in 2018 (in force 2022), and to DSM-5-TR by the American Psychiatric Association in March 2022