Project Description

Bereavement Disorder Fast Facts

Bereavement disorder is a condition in which feelings of grief after losing a loved one continue longer than usual and impair a person’s ability to function.

The condition is also known as complicated grief, prolonged grief disorder, or persistent complex bereavement disorder (PCDB).

In some cases, feelings of grief in PCDB get worse over time.

PCDB can lead to other serious mental health-related issues.

United Brain Association

PCDB can lead to other serious mental health-related issues.

What is Bereavement Disorder?

Bereavement disorder is a condition experienced by some after losing a loved one. Although it is normal to feel grief and sadness after a loved one’s death, the symptoms of this disorder continue for an extended period and may even grow worse over time. Feelings of grief, sadness, or numbness eventually impair a person’s ability to function in their daily life and may lead to severe mental and physical health complications.

Bereavement disorder may also be referred to as complicated grief, prolonged grief disorder, or persistent complex bereavement disorder (PCDB).

Symptoms of PCBD may include:

  • Intense feelings of sadness, pain, or guilt
  • Inability to think about little else than the loss of the loved one
  • Difficulty accepting the reality of the loved one’s death
  • Preoccupation with reminders of the loved one, either focusing on them or avoiding them
  • Emotional numbness
  • Feelings of hopelessness
  • Difficulty resuming normal activities or focusing on the future
  • Feeling of isolation from other people

The symptoms of PCDB differ from the typical grieving process in their intensity and duration. Different people move through the grieving process in varying ways, but the impact of feelings of grief should eventually improve. People with PCDB are significantly impaired by their grief for a year or longer.

What Causes Bereavement Disorder?

Scientists don’t know why some people develop PCBD when they lose a loved one. However, some risk factors seem to put people at an increased risk for developing the disorders. These risk factors include:

  • Losing a loved one in an unexpected or violent way
  • Losing a child
  • Losing a loved one with whom you have an exceptionally close or dependent relationship
  • Experiencing other problems, such as financial or legal difficulties, in conjunction with the death
  • Not having a support system or relationships to help you deal with the loss
  • Having a history of past trauma such as abuse or neglect
  • Having a history of specific mental health-related issues such as depression, post-traumatic stress disorder (PTSD), or anxiety disorders

Is Bereavement Disorder Hereditary?

PCBD does not seem to be an inherited disorder. However, some risk factors, such as anxiety disorders, appear to have a genetic component. People with a family history of these disorders are at an increased risk for developing the disorders themselves. Therefore, there may also be some genetic connection that increases the risk for PCBD. However, scientists have not identified any clear link between genetics and PCBD.

How Is Bereavement Disorder Detected?

Early diagnosis of PCBD is challenging because the disorder is characterized by an atypically prolonged period of grief by definition. Diagnosing the disorder too early risks misinterpreting normal effects of the grieving process as PCBD.

Warning signs that a person’s grief may be atypical include:

  • Focus on grief that overrides daily concerns
  • Disruption of a sense of identity (feelings that the person has lost part of themselves)
  • Inability to accept the reality of the loss
  • Difficulty trusting other people
  • Feelings of negative self-worth

How Is Bereavement Disorder Diagnosed?

A doctor with experience in diagnosing mental illnesses, such as a psychiatrist or psychologist, may diagnose PCBD. The disorder has not yet been classified by the Diagnostic and Statistical Manual of Mental Disorders (DSM), the diagnostic resource used by mental health professionals. However, a set of diagnostic criteria has been proposed and will be included in future editions of the manual. The criteria include:

  • The person has experienced the death of a loved one at least six months earlier.
  • The person has experienced at least one symptom of grief for longer than expected.
  • The person has experienced at least two symptoms most of the time for at least a month.
  • The symptoms cause significant distress or impairment.
  • Another mental health disorder does not better explain the symptoms.

PLEASE CONSULT A PHYSICIAN FOR MORE INFORMATION.

How Is Bereavement Disorder Treated?

PCBD is usually treated with psychotherapy, particularly cognitive-behavioral therapy (CBT) or a type of therapy called complicated grief therapy. No medications have proven effective at treating symptoms of complicated grief, but doctors may prescribe antidepressant medications if a person is experiencing symptoms of major depression at the same time.

How Does Bereavement Disorder Progress?

If PCBD persists for a long time, it can lead to other severe and potentially life-threatening physical and mental health-related issues. Potential long-term complications include:

  • Major depression
  • Anxiety
  • PTSD
  • Suicidal thoughts or suicide attempts
  • Sleep disorders
  • Substance abuse
  • Relationship difficulties
  • Financial difficulties
  • Susceptibility to medical conditions such as heart disease, high blood pressure, or cancer

How Is Bereavement Disorder Prevented?

There is no reliable way to prevent PCBD, but early interventions may decrease the risk that a susceptible person will develop the disorder. Potentially helpful steps may include:

  • Taking care to prepare a person for the death of a loved one when that loved one is in an end-of-life situation.
  • Making sure the person has the support of family, friends, or other communities after losing a loved one.
  • Providing grief counseling early on after the loss.

Bereavement Disorder Caregiver Tips

Some people with PCBD also suffer from other brain and mental health-related issues, a condition called co-morbidity. Here are a few of the disorders commonly associated with PCBD:

Bereavement Disorder Brain Science

Because PCBD shares some symptoms with major depression and the two disorders are often co-morbid, some research has looked for similarities between PCBD and depression. However, studies have found significant differences between the two, leading researchers to believe that PCBD and depression are distinct disorders that emerge from different types of brain activity.

One study has found that people with PCBD show increased activity in an area of the brain called the nucleus accumbens. This region is involved in the brain’s reward circuitry, and people with depression do not show similarly increased activity there. The study’s authors suggest that the activity may indicate thoughts about the person’s loss may trigger the brain’s reward responses and thus make it difficult for the person to move beyond their grief.

Bereavement Disorder Research

Title: Pilot Testing ADAPT a Bereavement Care Intervention (ADAPT)

Stage: Recruiting

Principal investigator: Nancy Dias, PhD

East Carolina University

Greenville, NC

Parental bereavement experiences are unique and require interventions adaptable to individual experiences. The web-based, multi-modal intervention, labeled ADAPT, incorporates varied self-management strategies including A: Asking for assistance (option to connect with child’s healthcare team); DA: Developing Adaptive ability (self-management tools: e.g., stress reduction, legacy building); P: Accessing Pertinent online resources (grief support networks/websites); and T: Tracking one’s health (self-administered surveys for grief, sleep, anxiety, and depression). A quasi-experimental, treatment-only design will be used for this study. The hypothesis is that the ADAPT intervention will promote positive adaptation to influence grief integration and consequently affect health outcomes (improved sleep and social interactions, and decreased anxiety and depressive symptoms). The purpose of this study is to describe the nature and degree of clinical benefit of the intervention on bereaved parents’ health outcomes.

 

Title: Iyengar Yoga for Prolonged Grief Disorder (Yoga)

Stage: Recruiting

Contact: Stacy Claesges

Medical College of Wisconsin

Wauwatosa, WI 

Experiencing the death of a loved one is inevitable for older adults. Before the coronavirus disease 2019 (COVID-19) pandemic, over 2.5 million people died annually in the United States, including 52,000 in Wisconsin alone, and COVID-19 has added to this toll. Each person who dies leaves an average of five grieving people behind. Most grieving older adults are resilient and recover their pre-loss functioning within one year. However, in about 10%, acute grief becomes protracted and debilitating, leading to the development of prolonged grief disorder (PGD), a clinically diagnosable mental health condition. PGD in older adults increases the risk for poorer medical, mental health, and cognitive outcomes; lower quality of life; disability; premature mortality; and suicide. Despite the magnitude of this problem, the neurobiology of PGD in older adults is poorly understood. Using Iyengar Yoga (IY) as a probe for PGD neurobiology, this pilot project aims to address this critical gap.

Our goal is to conduct a pilot study to examine in PGD the modulating effects of 10-week IY on circulating endocannabinoid and emotion processing brain circuits and the associations between biological changes and clinical response.

 

Title: Dementia Caregiver Chronic Grief Management: A Live Online Video Intervention (CGMI-V)

Stage: Recruiting

Principal investigator: Rachel Yehuda, PhD

Icahn School of Medicine at Mount Sinai

New York, NY

The exponential rise in the number of persons diagnosed with Alzheimer’s disease and related dementias (ADRD) places a heavy burden on family caregivers. The caregiver role that extends well beyond the placement of the care recipient in long-term care is associated with chronic grief, depressive and anxiety symptoms, dissatisfaction with care, and conflict with long-term care facility staff. This study will test the effects of a cost-effective chronic grief management intervention to be delivered using an online platform (Adobe Connect) and iPads. The study aims to decrease dementia caregivers’ chronic grief, depressive and anxiety symptoms, improve their positive states of mind, improve satisfaction with care post-placement, and attenuate caregivers’ conflict with facility staff.

Evidence indicates that Alzheimer’s disease or a related dementia (ADRD) family caregivers suffer long-term mental and physical health effects that place them at risk for premature death. They do not relinquish their role after placing a family member with Alzheimer’s disease or a related dementia (ADRD) in long-term care. In fact, these caregivers experience increased symptoms of depression, symptoms of anxiety, and chronic grief post-placement. In the long-term care (LTC) environment, caregivers’ chronic grief is exacerbated by their lack of knowledge about late-stage Alzheimer’s disease or a related dementia (ADRD) and their sense of loss, guilt, and role captivity. Interventions targeting improvement of ADRD caregivers’ mental health have focused overwhelmingly on in-home care. We tested a Chronic Grief Management Intervention (CGMI) with ADRD caregivers in long-term care and found it feasible (recruitment, retention, and attendance). The Chronic Grief Management Intervention (CGMI) had significant effects on caregiver knowledge and mental health outcomes (heartfelt sadness/longing and guilt; aspects of chronic grief). Although caregivers reported high satisfaction with this intervention, many could not attend the 12 face-to-face group sessions due to the burden of time and competing responsibilities. Therefore, we reduced the number of sessions to 8 and adapted the Chronic Grief Management Intervention to be delivered as a live streaming video, online group intervention; Chronic Grief Management Intervention-Video (CGMI-V), using Adobe Connect (online platform) and iPads. We tested CGMI-V in a single group pilot study for feasibility (recruitment, retention, attendance, and technology ease of use) with Alzheimer’s disease or a related dementia (ADRD) caregivers post-placement. We obtained 100% retention with high caregiver satisfaction with the intervention and the online technology used to deliver it. Our proposed study, Chronic Grief Management: A Live Streaming Video, Online Intervention (CGMI-V), builds on these results and is guided by a Model of Dementia Caregiver Chronic Grief in the Long-Term Care Setting. The purpose of this study is to test the effects of the 8-week CGMI-V on a caregiver primary outcome (chronic grief); a secondary mental health outcome (symptoms of depression, symptoms of anxiety, and positive states of mind), and a secondary facility-related outcome (caregiver satisfaction with care and conflict with facility staff) related to a minimal treatment (MT) control group. We propose to test the group-based Chronic Grief Management Intervention-Video (CGMI-V) in a Stage I longitudinal, randomized clinical trial. 144 Alzheimer’s disease or a related dementia (ADRD) caregivers whose family members reside in one of the participating long-term care facilities will be randomly assigned to either CGMI-V or MT condition. Caregivers in the Chronic Grief Management Intervention-Video (CGMI-V) condition will participate in 8 weekly live streaming videos online group sessions. Caregivers in the minimal treatment (MT) condition will receive written information about late-stage ADRD at baseline. For both conditions, data will be collected at baseline, eight weeks (immediately post-intervention), and then at 24 weeks post-baseline, using measures of caregiver grief: Marwit-Meuser Caregiver Grief Inventory(MM-CGI); depressive symptoms: Center for Epidemiological Studies Depression Scale (CES-D); anxiety symptoms: State-Trait Anxiety Inventory (STAI); positive states of mind: Positive States of Mind Scale (POSMS); satisfaction with care: Family Perception of Care Tool (FPCT); conflict with facility staff: Family Perception of Caregiving Role (FPCR subscale), knowledge of Alzheimer’s disease: Family Knowledge of Alzheimer’s Test (FKAT), loss, guilt and role captivity (FPCR subscales). Specific aims are to 1) Establish effect sizes of the Chronic Grief Management Intervention-Video (CGMI-V) condition and Minimal Treatment (MT) control condition on changes in caregiver chronic grief. 2) Establish effect sizes of the CGMI-V and Minimal Treatment (MT) control condition on changes in caregiver symptoms of depression and anxiety and on positive states of mind. 3) Establish effect sizes of the CGMI-V condition and the Minimal Treatment (MT) control condition on changes in caregiver satisfaction with care provided in the facility and conflict with staff, and 4) Explore mechanisms of intervention impact on all caregiver outcomes. Our long-term objective is to develop a chronic grief treatment modality that will be adopted in long-term care facilities as part of routine support for Alzheimer’s disease or a related dementia caregivers post-placement. This, in turn, will impact public mental health for this growing segment of the population.

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