Understanding Prolonged Grief Disorder

Grieving the loss of a loved one is one of life’s most profound challenges, and each individual’s grief journey is unique. However, for some, the grief experience can become particularly complex and enduring, impacting daily life in ways that may require specialized support. This condition, known as Prolonged Grief Disorder (PGD), is the focus of the 2024 Living with Grief® program by the Hospice Foundation of America (HFA), with expert insights from panelist Dr. Sonya Lott, PhD. 

Here, we explore Prolonged Grief Disorder including its symptoms and misconceptions, and guidance on supporting those experiencing this condition.

What is Prolonged Grief Disorder?

Prolonged Grief Disorder, formerly known as complicated grief, is a mental health condition that affects about 10% of grieving individuals. Unlike typical grief, which gradually lessens over time, PGD involves a persistent, intense yearning or preoccupation with the deceased, often lasting well beyond a year after the loss. These feelings can disrupt daily life and impact an individual’s ability to function, thus affecting their well-being and personal relationships.

According to Dr. Lott, who has over three decades of experience in psychology and grief counseling, Prolonged Grief Disorder requires careful attention and understanding. “Prolonged grief, which used to be called complicated grief, is so misunderstood,” she explained. “There’s so few people who are actually trained in how to help.” Dr. Lott’s journey specializing in grief began with her own personal experience of loss after her mother’s passing. This reignited her calling to help others navigate  the profound challenges of grief.

Recognizing the Symptoms of Prolonged Grief Disorder

One of the complexities of PGD is that it can resemble typical grief, especially in the early stages after a loss. However, it is characterized by a sense of “stuckness” in intense emotions that usually ease over time. Dr. Lott described the hallmark symptom as “an intense yearning or missing of the person and/or a preoccupation with thoughts about the person, which might include how they died or regrets about actions that could have been taken.”

Additional symptoms of PGD may include:

• Disbelief: Even after a year or more, the person may have difficulty accepting the loss. They know intellectually that the person has died but still feel as if it isn’t real. “They can’t act as if,” said Dr. Lott. “They may still talk about the person in the present or seek out mediums to try to continue communication.”
• Identity Disruption: A strong sense of identity tied to the deceased may lead the person to feel that a core part of who they are has also died. They may struggle to redefine themselves in the absence of the deceased loved one.
• Intense Emotional Pain: This can manifest as deep sadness, anger, regret, or a range of conflicting emotions that remain prominent and unmanageable.
• Avoidance of Reminders: Some people may avoid looking at photos or visiting places they shared with their loved one, while others may leave their loved one’s belongings untouched in an attempt to preserve their memory.
• Emotional Numbness: The intensity of their pain can cause peoples to shut down emotionally, feeling disconnected from others or unable to experience joy in activities they once enjoyed.

To meet the criteria for PGD, at least three of these symptoms must be present nearly every day for at least 30 consecutive days, starting at least a year after the loss. While symptoms and their manifestations can vary greatly from person to person, the duration and intensity of these experiences are what distinguish PGD from typical grief.

Misconceptions About Prolonged Grief Disorder

Dr. Lott emphasizes that PGD is often misunderstood, even within the healthcare and hospice communities. One major misconception is that PGD is an attempt to “pathologize” typical grief. Dr. Lott is quick to clarify this misconception. “The official diagnosis is not an attempt to pathologize ‘typical’ grief. Instead, it’s an attempt to recognize this small subset of people who are suffering more and are often misdiagnosed as depressed.”

Another widespread misconception, particularly in hospice care, is rooted in the idea of grief following five distinct stages: denial, anger, bargaining, depression, and acceptance. Dr. Lott notes that while the five stages, popularized by Elizabeth Kübler-Ross and David Kessler, were groundbreaking at the time, they do not fully encompass the diversity of grief experiences. “Because everybody’s experience is unique,” she explained, “any attempt to identify a particular subset of people who struggle even more than we would anticipate is not pathologizing their grief.” Instead, the focus is on providing a diagnosis that allows for effective, targeted treatment.

Treatment for Prolonged Grief Disorder

When untreated, Prolonged Grief Disorder can cause significant suffering and may prevent individuals from fully engaging in life. Fortunately, effective treatment is available through Prolonged Grief Therapy (PGT), a transformative approach designed to help those who are “stuck” in their grief. Dr. Lott explained, “There is a transformational treatment available, and it’s just really, really important that people are appropriately diagnosed so that they can get that transformational care.”

Prolonged Grief Therapy, developed at Columbia University’s Center for Prolonged Grief, uses evidence-based techniques to help individuals work through unresolved aspects of their grief. The therapy provides a structured approach, assisting individuals in processing their emotions, rebuilding their sense of identity, and reengaging with their lives and relationships. For those seeking care, Dr. Lott recommends consulting the Center for Prolonged Grief, which offers resources for the public and professionals alike and includes a directory of trained therapists.

Supporting Someone with Prolonged Grief Disorder

Supporting a friend or family member with PGD requires patience, understanding, and a compassionate approach. Dr. Lott notes that many people experiencing PGD often feel misunderstood and may have seen multiple therapists before finding someone who specializes in prolonged grief. “By the time people find me,” she said, “they’ve often seen a number of therapists and felt like they needed to take care of the therapist, or they weren’t quite sure the therapist could hold their grief.”

For caregivers who believe a family member may be struggling with prolonged grief, Dr. Lott suggests guiding them to specialized resources such as the Center for Prolonged Grief, which offers reliable information and a database of experienced grief counselors. The knowledge that prolonged grief disorder is real, and that it affects a subset of grieving individuals, can help families feel validated in seeking specialized support.

Moving Forward: A Path Toward Healing

While grief is a lifelong journey that evolves over time, Prolonged Grief Disorder is a specific, diagnosable condition that can be managed and transformed with the right care. As Dr. Lott emphasized, “It’s not about pathologizing grief. It’s about recognizing those who are suffering more profoundly and providing the care they need to regain balance and well-being.”

Through effective treatment and greater public awareness, individuals and families can learn to navigate their grief journey with compassion, understanding, and hope.