Center for Prolonged Grief

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Prolonged Grief

How it's diagnosed

The World Health Organization (WHO) and American Psychiatric Association (APA) now officially recognize Prolonged Grief in their official diagnostic manuals. The WHO’s International Classification of Diseases 11th Edition (ICD-11) released guidelines in 2018; APA’s Diagnostic and Statistical Manual 5th Edition Text Revision (DSM-5-TR) criteria followed in 2020. The DSM-5-TR criteria are more specific but harmonize well with the ICD-11 guidelines.

In each of these systems, PGD is diagnosed when grief continues to seem inescapable, intruding on almost everything a griever does and it’s been more than a year since a loved one passed. A person with PGD has persistent strong feelings of yearning and longing. Thoughts and memories of the person who died often fill their mind and prevent them from living a satisfying life. They might still find it hard to believe that their loved one is never coming back. They might feel strong feelings of loneliness, a sense of disconnection from others and a lot of emotional pain or numbness. They try to avoid anything that reminds them of the loss.  It might be hard to have a feeling that anything matters in their life anymore and feel confused about who they are without their loved one.

What increases the risk of developing PG

It’s very hard when anyone we love dies, but certain circumstances, contextual factors, and consequences of a loss make the death of a loved one even more difficult than usual. About 10% of people bereaved by natural causes experience PG. The likelihood of PG increases substantially when certain risk factors are present. For example, sudden or violent loss increases the likelihood of PGD, as does death of a young person, a child or a spouse, loss of multiple important people, a history of trauma, anxiety, or depression and dealing with especially challenging financial or social stressors in the aftermath of the death.

Why we think it's good to have a diagnosis

There is a lot of confusion about the diagnosis of Prolonged Grief Disorder and a concern that psychiatrists are trying to pathologize a normal process. This is an unfortunate misconception. While we appreciate the importance of understanding that grief is a natural human response, we do not agree that we should ignore those who are unable to move forward after an especially difficult loss. Here are some key points we hope will help clarify how we understand grief and why we think a diagnosis is important.

1. Grief is a natural human response to loss with no time limit

The fact that some people get caught in a form of grief that does not evolve over time  does not mean there is a time limit on grief. Rather a large body of data from all over the world that shows there are people whose health and wellbeing suffer, along with that of their families, because their grief persists in a way that is  pervasive and intense.  This is a clear indication that extra help is needed. There is no shame in this. It’s similar to a physical injury.  Imagine, for example, that 100 people have fallen off of a ladder. All of them have bruises and some muscle soreness,  and 10 of them have a broken bone. Surely, this is a normal responses to such a fall, yet not everyone who falls off a ladder breaks a bone. Yet we would not think that diagnosing the broken bone is medicalizing a normal process, nor would we want a person seeking help to be stigmatized for doing so. We treat mental and physical health differently in that we seem to have difficulty understanding that it is normal to adapt to all of life’s challenges and it is also normal to sometimes need help doing so.  The official diagnosis provides some guidance for recognizing people who need more help in adapting to a difficult loss. 

Similar to any human social, psychological or physical response, grief is unique to each loss situation. There is no right or wrong way to grieve and the time it takes to cope with a loss and adapt to the changes it brings is unique too. Moreover, it’s different when we lose different people.  The way we respond to a loss changes as we cope with the stress of the loss and as we find a way to learn about the world changed by the loss and move forward in our own life. There’s no right and no wrong way to do this either. How and how much grief recedes as we adapt are also unique to each loss. Grief never goes away completely after someone close dies, but it does move into the recesses of our minds, where it allows us to be present and connected in our ongoing lives and where it might contribute to our learning and growing over the years. 

2. It’s natural for people sometimes to have difficulty adapting

Sometimes a bereaved person finds themselves stuck in a place where grief remains strong and insistent for many years. Their lives are infused with intense yearning, longing and preoccupying thoughts and memories of the person who died even as they try their best to evade the reality and its pain. This is Prolonged Grief Disorder, a condition that makes it difficult for a person to engage fully in their own lives, harming their physical, emotional, and/or social health. People who are grieving in this way are often misunderstood and pressured by others. The future looks bleak and their lives feel emptied of meaning. Suicidal thoughts are common and sometime people act on these thoughts. Their relationships with friends and family suffer. Yet when a person with PGD seeks help, their situation is often misunderstood. Mental health professionals and even some grief therapists diagnose and treat depression or PTSD, often to no avail. This adds to a griever’s feeling that there is something wrong with them and makes them feel worse about themselves. Other times a professional over-focuses on normalizing grief by telling the person there is nothing wrong with them. They need to deal with the loss in their own way, to find a way to accept what cannot be changed. While treatment with a well meaning, empathic professional can often  be helpful, it doesn’t help people adapt to a loss. 

3. PGD is different from depression and trauma

Prolonged Grief Disorder (PGD) shares similarities with Major Depressive Disorder (MDD) and Post Traumatic Stress Disorder (PTSD); these conditions often occur together. However, it’s essential to differentiate them because they respond to different treatments.

PGD is often confused with depression, as both are marked by intense sadness. Yet, sadness and loss of interest and pleasure are core features of  depression while yearning, longing and preoccupation with a loved one are core features of grief.

PGD and PTSD both develop in response to a stressful life event. Yet, PTSD is characterized by fear and PGD by intense yearning and longing for the deceased. Moreover, a traumatic event is a time-limited threat to a person’s life or physical integrity while a loss is ongoing and brings a wide range of permanent changes in a bereaved person’s life. 

Effective help depends on a clear understanding of what a person is dealing with.

4. Having an official diagnosis means people can get help they need

A DSM and ICD diagnosis helps ensure that health and mental health practitioners  and the educational institutions that train them, prioritize understanding grief and PGD and to be informed about available treatments. A diagnosis helps researchers, as well as clinicians, to communicate more clearly. It increases awareness of and access to appropriate and effective treatment. Importantly, even though this is a new diagnosis, short term efficacious treatment is available. An official diagnosis can change the lives of people with PGD and their families.