Prolonged Grief Disorder: Recognition & Treatment

This article aims to summarise the evidence-based paradigm shift in our understanding of loss and grief (culminating in recent changes to diagnostic criteria for psychological ‘disorders’) which now allows those people significantly incapacitated by grief to be recognised and receive access to specific treatment.

Additionally it behoves the author to highlight for unwary consumers of tertiary literature (particularly ‘tips for’ and ‘how to’s), the superseded theories underpinning many sources that have yet to assimilate the new grief research.

To be clear, the material presented here is only relevant to one type of loss, that is, the death (traumatic or otherwise) of a person and the subjective response (“grief”) to this event (“bereavement”) experienced by an individual (“mourner”, “the bereaved”) who was motivationally significant (”close”) to the deceased.

For more information on coping with other types of loss, please click here.

By the time a 2022 article^(1.) in The New York Times appeared, declaring provocatively that ‘Psychiatry has now decided how long someone ‘should’ grieve’ thrust it into the limelight, a decades-long debate in the more esoteric domains of scientific and academic literature had already generated much (arguably more bromidic) carping (that, ironically, arose from previous headlines demanding an overhaul of ‘debunked’ ideas about grief- see below), including (most prominently) the assertion that the recent classification of a certain kind of grief as a ‘mental disorder’ risks pathologising (making a disease out of) human grief itself.

Seeming oblivious to being pipped at the post (the data from clinical trials^(2.) supporting the new diagnosis was already in) and furthermore unheard in the fracas, were the longsuffering advocates for revision.

These proponents asserted that the new classification signified a consensus-driven milestone^(3.) in addressing the longstanding lack of access to evidence-based treatment for the small but significant proportion of people (approximately 10% in the case of natural loss and 49 % in the case of traumatic loss^(4.)) who (for reasons eluding three decades of vigorous research) will suffer extraordinarily severe, persistent and disabling grief for a prolonged period, rather than experience the varied responses and trajectories of adaptive coping which see the majority of mourners rebuild their grief-stricken lives through ‘normal’ psychosocial growth and meaning-making^(5.).

Or, as summarised succinctly by a prominent PGD researcher and therapist:

To ignore evidence demonstrating that PGD is associated with significant distress and dysfunction well beyond the ‘normal’ grief process, and deny that individuals meeting PGD diagnostic criteria often want and seek effective treatment options, is to turn a deaf ear to the call for help of those suffering from PGD^(5.).

Had even the thrust^(6.) of The Guardian’s 2012 feature “Debunked: The Universal Psychology of Grief” been used as the headline (they instead chose “We all grieve in our own way”), it is still unlikely to have generated the same level of notoriety as achieved by the Times the article referred to above- presumably because by that time, the proclamation (largely pre-empted by research data challenging the validity of the preeminent Kuber-Ross (stages) model of grieving) came as no surprise, with it indeed being ‘common knowledge around the village’ that grief does not follow a pattern.

Another newspaper was more direct (Time to bury the ‘five stages of grief’ myth^(7.)) in its critique of the deeply embedded cultural belief that we (all) sequentially experience denial, anger, bargaining, depression and acceptance when we grieve, stating:

There’s just one big problem: the five-stages-of-grief theory is not based on any kind of scientific evidence. In fact, it’s been completely debunked.

The reporter went on to quote the research finding:

Contrary to our long-held assumptions, there are no rules to grief, no stages except our personal journeys and no task except those we set ourselves. Normality is not what we return to; it is what we go through.

Other researchers have expressed similar opinions, with criticisms arguing conceptual concerns, lack of empirical validity, its failure to assist in identifying those at risk or with complications, and the potentially negative consequences for bereaved persons themselves, with the best of them concluding:

Stage theory should be relegated to the past and eliminated from contemporary clinical practice^(8.).

The time prolonged grief should have hit the headlines

Attachment theory, established by Mary Ainsworth in the 1960s and 70s, was applied in the 1980s (in the seminal work of John Bowlby) to identify the prototypic behaviours and characteristics of the ‘insecure’ adult attachment styles associated with disordered grieving^(9.).

Indeed, more recent research challenging the utility of attachment theory in PGD management has found that insecure attachment does not aggravate prolonged grief symptoms over time^(11.) and that  attachment styles do not reliably predict changes in prolonged grief symptoms, with one researcher concluding that:

Grief experts should reconsider the current central role of adult attachment styles in prolonged grief theory pending further empirical investigation^(12.)

More on ‘Normal’ vs ‘Prolonged’ grief

Losing someone is an exceptionally distressing event and will cause a usually limited period of grief. However, grieving is complicated by emotional, cognitive, and behavioural maladaptation in some cases, often resulting in severely impaired psychosocial functioning^(13.).

For most people, symptoms of grief peak in the six months after the death. The PGD outliers (about 4% of the bereaved) remain “stuck and miserable, and continue into the long term to struggle with mood, functioning and sleep”^(14.).

At 30 days of ‘normal’ bereavement, there is an elevated risk for heart attack and stroke, along with alterations to immune function^(15.) that are linked to the severity of the symptoms.

If, over time, grief does not abate as individuals adapt to life without their partner, the bereaved’s grief response (whether adaptive or not) may begin to negatively impact^(16.) their ability to ‘lead an ordinary life’.

For more information on the signs and symptoms of ‘normal’ grief, please click here.

A new view of grief

As many different views regarding grief have been famously expressed as the number of leading thinkers that history has produced:

Indeed, researchers^(9.) concede that conceptualising grief as a multidimensional and dynamic process calls into question many classical explanatory models based on stages or phases.

For those interested in ‘new’ models of grief, and the neurobiological research informing them, please see Appendices 1 and 2 below.

Winter is come and gone, but grief returns with the revolving year.

Percy Bysshe Shelley, Adonais, Stanza 18.

Chosen from numerous other nosological variants rendered throughout close to three decades of theorising and research (including complex and complicated) the title ‘prolonged’ serves additionally as a descriptor in but one of a set of criteria officially distinguishing the extraordinarily severe, persistent and disabling grief (as mentioned above) as a (diagnosable, pathological) mental health ‘disorder’.

Arguably, the choice of this epithet, being more consonant with a dimensional (intensity, frequency, duration, destructiveness) than a typological (symptom type and mix ) rationale, avoids much of the confusion and controversy the alternatives engender.

The essential characteristics^(17.) of PGD may be summarised as including:

• a history of bereavement (as defined above),
• persistent and pervasive longing for, or preoccupation with, the deceased associated with intense emotional pain (see here for grief symptoms),
• functional impairment (reduced capacity to lead a ‘normal life’)

More specifically, the DSM-V-TR criteria for a diagnosis^(17.) of PGD applies to experiencing grief that:

1. Has persisted for 12 months (or 6 months for children) relative to the societal/cultural/religious norms involved),

2. includes:

• a persistent (most days) and pervasive longing for, and/or preoccupation with, the deceased, attributable to at least three of these symptoms:

• intense emotional pain (e.g., sadness, guilt, anger, denial, and blame)
  • identity disruption (e.g. feeling that a part of oneself has died)
  • marked sense of disbelief
  • avoidance of reminders that the person is dead
  • difficulty reintegrating into one’s relationships and activities after the death (e.g. problems engaging with friends, pursuing interests or planning for the future)
  • emotional numbness (absence or marked reduction of emotional experience)
  • feeling that life is meaningless
  • intense loneliness

• functional impairment (work, social, domestic) due to the above, and,

3. excludes:

• (cases) where the symptoms are not better explained by major depressive disorder, posttraumatic stress disorder or another mental disorder, or attributable to the physiological effects of a substance (e.g. medication, alcohol) or another medical condition.

Favoured^(24.) amongst a plethora of validated screening and diagnostic instruments (including The Grief Response Scale (GRS)^(3.), and International Prolonged Grief Disorder Scale (IPGDS, 2020)), the Prolonged Grief Disorder-13-Revised (PG-13-R) screening tool’s has been demonstrated to produce few ‘false positives’ (i.e. wrong diagnoses) when usde to aid a comprehensive analysis of the criteria above.

PGD: three points of contention

Of noteworthiness to those considering if PGD is a ‘good fit’ for them, are three points of interest regarding this relatively new diagnosis:

Some leeway in interpretation has already become the practice of many grief clinicians^(23.), with two levels- ‘moderate’ and ‘strict’- of conformance appearing to meet the need to further classify the disorder as ‘strict PGD’ or ‘moderate PGD’ (as it is the wont of many expert clinicians). As of this article’s date of publication, no such division exists in the current DSMV.

PGD is an ‘adult’ diagnosis which is yet to be proven valid for bereaved youth. Common grief reactions in children and adolescents include crying, feelings of sadness, anger, guilt, and longing to be reunited with the deceased person.

They may also experience difficulties with concentration, sleeping, or school performance, becoming socially withdrawn or developing health risk behaviours such as fighting or substance use. Only one ‘interview’ instrument is currently available^(13.) for child mourners.

The cultural caveat: a ‘refreshing and novel feature’^(14.), this provision acknowledges that various manifestations of disordered grief will vary upon an individual and cross-cultural basis i.e. mourning can take place in radically different ways based on a thoroughly different understandings of death.

Some anthropologists are of the view that Indigenous Australian naming taboos, for example, serve “to make people ‘acutely aware’ of the person whose name is being avoided”^(6.). The researcher goes on to say:

As a form of remembering through non-remembrance, it is a psychological mirror image of more familiar traditions where creating and cherishing a representation of the deceased is considered necessary for healthy mourning.

In determining that the grief presentation is more severe and of longer duration than would be expected by an individual’s culture and context, research has directed clinicians toward affected areas including: prevalence of nightmares, sleep quality, hallucinations, somatic (bodily) grief experiencing, functional impairment, and spirituality and social and economic status^(33.).

Despite this progress, even cross-language validity has not yet been established.

How is PGD different to bereavement-related post-traumatic stress and depression disorders?

Whilst much recent research^(34.) has focused on differentiating pinpointing the main symptoms or experiences typical of one that sets it aside from the other three distinct syndromes (each with different core symptoms), point 3. above alludes to the high degree of symptom overlap and proven association (co-morbidity) between PGD and bereavement-related post-traumatic stress disorder (PTSD)- direct, or due to “witnessing the threatened or actual death of others”- and major depressive disorder (MDD).

Indeed, PGD is only one of several common mental health responses to bereavement^(4.).

Symptoms of loss resembling those seen in MDD include amotivation, sadness, withdrawal, rumination, and compromised executive function. Loss is also unique from MDD, in that it is associated with atypical symptoms such as weight gain and hypoactive hypothalamic-pituitary-adrenal axis (HPA) responsivity^(25.)

Symptoms of loss resembling those seen in MDD include amotivation, sadness, withdrawal, rumination, and compromised executive function. Loss is also unique from MDD, in that it is associated with atypical symptoms such as weight gain and hypoactive hypothalamic-pituitary-adrenal axis (HPA) responsivity^(25.)

A rough guide by a prominent researcher^(30.) asserts the following regarding the 19% affected:

In the former (bereavement-related PTSD), 12-16 % cohort who lose a loved one violently or suddenly, symptoms of both disorders can also co-occur^(23.). Traumatic losses, such as death by suicide or violence or death by protracted illness, increase risk for post-co-morbid traumatic stress (PTSD) and prolonged grief disorder (PGD).

Indeed, the ICD classification emphasises that “similar to Post-Traumatic Stress Disorder, Prolonged Grief Disorder may occur in individuals who experience bereavement as a result of the death of a close person occurring in traumatic circumstances.”

PGD is more common in parents who have lost children, when the loss of the decreased is sudden or violent (e.g. suicide, homicide, accident), and is less common^(7.) after an expected loss (e.g. chronic illness).

In particular, preoccupation^(10.) has been emphasised as an important cognitive symptom in a broad range of stress-related disorders.

What are the risk factors for PGD?

O, grief hath chang’d me since you saw me last,

And careful hours with time’s deform’d hand

Have written strange defeatures in my face.

William Shakespeare, The Comedy of Errors, Act V, scene 1, line 297.

As well as the magnitude of physical and mental health consequences that result from a loss, an individual’s appraisal, or subjective assessment, of what has been lost, is hypothesised to positively (e.g. high trait optimism, social orientation & support) or negatively (e.g. co-morbid depression or arousal dysregulation) influence his or her emotional reaction to the stressor and the coping strategies that are employed. Numerous other risk factors for PGD have been identified including^(25.):

• Older age (eg, >61 years)
• Female sex
• Racism, inequity, and disparities
• Lifetime psychiatric history (eg, anxiety and depressive disorders)
• Bereaved of a child or spouse
• Death of a young person
• Bereaved multiple times
• Impaired family functioning prior to the death
• Uncertainty about the cause of death
• Anxious attachment style (see below)

The treatment of PGD

Unsurprisingly, trauma-focussed therapies have been adapted and integrated to form new modalities of PGD treatment, with growing evidence from randomised controlled trials finding these hybridised interventions to be more effective than the both non evidence-based (usually extemporised and demand-driven ‘grief work’) and non-targeted (e.g. depression focussed psychotherapies) approaches traditionally co-opted on an ad hoc basis.

Notwithstanding this, loss-based models linked to attachment theories have provided sage counsel and utility for some mourners, and symptom-specific (e.g. insomnia^(27.)) treatments are worthy of consideration for those seeking a ‘personalised medicine’ approach to their grief.

Cognitive Behaviour Therapy (CBT)-based PGD treatments (PG-CBT)

A cognitive-behavioural framework of PGD theorises three core psychological mechanisms^(26.):

• maladaptive anxious and depressive avoidance coping strategies,
• poor integration of the loss into autobiographical memory, and
• persistent maladaptive grief cognitions.

Thus PG-CBT may involve strategies including:

• education about normal and prolonged grief processes,
• Managing grief emotions—both painful and positive (grief monitoring and psychoeducation),
• imaginal exposure to the most painful aspects of the loss, together with cognitive restructuring, and
• transformation of the loss to enable change, including setting aspirational goals and living with reminders.

Borrowing elements from other approaches (e.g. Gestalt Therapy, Mindfulness, systemic family therapy, and psychodrama), these emerging treatment protocols may be viewed as integrative, and expert advice should be sought by prospective consumers regarding the suitability of particular protocols for them.

PG-CBT techniques include, but are not limited to, parenting skills assignments, progressive muscle relaxation, grounding techniques such as diaphragmatic breathing, affect regulation, cognitive coping, trauma narrative development and expression, and gradual (usually in-vivo) exposure to the distressing stimulus.

EMDR

In recent years, the use of EMDR, proven effective^(28.) in treating PTSD, has also been integrated into the treatment of PGD, aimed primarily at distressing death memories.

Indeed, overwhelming and sudden loss can disrupt natural grief processes and result in trauma symptoms such as nightmares, flashbacks and avoidance.

Predicated on the finding that whereas PTSD symptoms are associated with behavioural inhibition of aversive stimuli, PGD symptoms are linked to orientation to rewarding stimuli, EMDR treatment for PGD usually occurs in the context of a range of other treatment modalities, including cognitive restructuring, fostering future relationships work, behavioural activation, and goal setting.

EMDR has been found^(29.) to effectively deactivate hindbrain regions implicated in the downregulation of the  autonomic nervous system hyperarousal responsible for some symptoms of PGD, and activate the (refer to diagram in appendix 2) hippocampus, anterior cingulate cortex (ACC), medial prefrontal cortex (mPFC), and orbitofrontal cortex (OFC)- areas that are implicated in crucial cognitive, affective, and behavioural processes that aid mourners in navigating their challenges.

Other treatments

Yet to be validated as evidence-based approaches, embodiment therapies, behavioural activation (BA), and several pharmacological interventions (including Naltrexone^(31.) & some psychedelics^(32.)) have demonstrated some promise for those seeking relief from PGD.

If you think you or someone you know would benefit from Grief Counselling in general, or treatment for Prolonged Grief Disorder, please call 07 3831 4452 or contact us via email for more information.

If you feel in immediate need of help, please call Lifeline (13 11 14), or the following grief information and support organisations:

Griefline: 1300 845 745. The helpline operates Monday to Friday from 8am to 8pm AEST, and booked calls are available 7 days a week..

Australian Centre for Grief and Bereavement: Offers phone counselling 1800 222 200, support services and resources. visit www.aged.grief.org.au or download ‘My Grief’ app for advice and support.

Editor’s note: The text and images comprising this article are for educational purposes only, are not intended to be a substitute for professional advice, and do not necessarily reflect the views of Brisbane Counselling Centre. The full disclaimer may be viewed here.

Appendix 1: New models of grief

Models such as the Dual Process Model are based on the way in which the bereaved person copes with their distress, as well as their coping resources^(3.).

It proposes (see diagram below) that the bereaved oscillate between loss-orientated processes (such as experiencing loss related intrusions, continuing bonds with the deceased, avoiding restoration of one’s life) and restoration- orientated processes (such as attending to life changes, distracting oneself from grief and forming new roles and relationships)^(10.).

The model suggests that such strategies may be adaptive at first, or used on an ad hoc basis. Sustained over time, however, they can become rigid defences leading to prolonged grief. One example would be rumination, which can be used either to process loss or as an avoidance strategy.

Other contemporary models describe grief as a process where coping mechanisms are geared towards trying to make sense of what has happened and of life after the loss. If successful, the meaning-making process can bring about positive changes in the bereaved person’s sense of identity, meaning in life and interpersonal relationships.

Such meaning reconstruction models centre on describing the processes involved in assigning new life and personal meaning following the experience of loss. They also show that a proportion of bereaved people not only respond resiliently and adapt to the new situation without their loved one, but report being able to survive the loss by finding renewed meaning in their lives and experiencing positive changes.

Bonano’s^(17.) four trajectories model has also resonated with adults in otherwise normal circumstances who are exposed to an isolated and potentially highly disruptive event, such as the death of a close relation or a violent or life-threatening situation:

• Resilience: the (natural) capacity for generative experiences and positive emotions to maintain relatively stable, healthy levels of psychological and physical functioning.
• Recovery: when normal functioning temporarily gives way to threshold or sub-threshold psychopathology (e.g., symptoms of MDD or PTSD), usually for a period of at least several months, and then gradually returns to pre-event levels.
• Chronic dysfunction: prolonged suffering and inability to function, usually lasting several years or longer.
• Delayed grief or trauma: When adjustment seems normal but then distress and symptoms increase months later.

(nb researchers have not found evidence of delayed grief, but delayed trauma appears to be a genuine phenomenon).

The integrative-relational model⁽³⁾ describes four dimensions that may play a role in both adaptive and prolonged grief:

Stun-shock: describes the period of grief marked by intense and dysregulated symptomatology, including but not limited to confusion, bewilderment, dissociation, hypervigilance, intrusive thoughts and rumination.

Such symptoms are often associated with difficulties in processing and making sense of the circumstances surrounding the death, particularly in the case of traumatic death. Sustained over time, these responses can lead to the development of PTSD and, in some cases, PGD.

Avoidance-denial: describes the point at which the bereaved person, in an effort to cope with their distress, primarily resorts to avoidance strategies to distance themselves from anything associated with the loss.

Avoidant coping of this kind can be conscious and deliberate, as sees in efforts to avoid places with memories, or unconscious and automatic, as seen in instances of denial. It includes diversionary responses, warding off memories, making an effort not to remember, and substance use, among others.

It enables the bereaved person to disengage from their grief, thereby reducing emotional distress and mitigating the impact of the loss. In the early stages of grief, such avoidance may have an adaptive function, however, if these avoidant responses continue over time, they can give rise to rigid defences leading to prolonged grief.

Continuing bonds-connection, includes coping mechanisms specifically geared to different aspects of the loss and the associated emotions. Examples include the use of keepsakes, visiting places, the urge to share memories with another person and so on, as well as things to activate continuing bonds, such as having imaginary conversations with the loved one.

Growth-transformation, signifies the degree to which the grieving process can offer renewed meaning. This may involve accepting the loss and its impact, the emergence of new opportunities and goals for the future, the reconstruction of one’s self-identity and positive changes in beliefs, values, goals and meaning in life.

The model is not intended to reflect phases or sequential stages, but rather combinations of symptomatological responses, coping strategies and specific outcomes, such as new meanings that may emerge at a particular point during bereavement. Any of these dimensions can co-exist to varying degrees with the others, which can be very useful in clinical intervention.

Informing the new modelling of grief above, much (technologically-advanced) grief research data has been compiled.

Physiological reactions to bereavement include neuroendocrine, immunological and somatic changes^(22.) with numerous molecular mechanisms^(18.) and centres of brain activity^(15.) related to the loss of a loved one, and advanced neuroimaging has revealed significant differences in brain activity between ‘normal’ and ‘disordered’ grief.

The findings (please refer to diagram above for abbreviations) suggest that:

• partner loss is accompanied by basolateral amygdala (BLA) inhibition and altered hypothalamic–pituitary–adrenal (HPA) axis functioning (resulting in elevated cortisol levels and flattened diurnal cortisol slopes), leading to the emotional blunting, social withdrawal, impaired decision making, and lack of flexibility often observed in the bereaved^(19.).
• the onset and maintenance of grief symptoms involve neural reward system activity (involving dopamine, oxytocin, and endogenous opioids) associated with thoughts of the deceased. In a complex and paradoxical interplay, mourners may seek out connection with the deceased (approach) and simultaneously avoid painful reminders of the loss (avoidance). Notably, the conflict between approach and avoidance also characterises substance use disorders.
• when compared to normative grief, PGD involves a differential pattern of activity in the amygdala and orbitofrontal cortex (OFC); likely differential activity in the posterior cingulate cortex (PCC), rostral or subgenual anterior cingulate cortex (ACC), and basal ganglia overall, including the nucleus accumbens (NA); and possible differential activity in the insula^(20.). It also appears that oxytocin signaling is altered in PGD, though the exact mechanism is unclear.
• whereas both ‘normal’ and ‘disordered’ mourners show pain-related neural activity in response to reminders of the deceased, only those with PGD showed reward-related activity in the NA^(21.). Furthermore^(22.), this NA cluster was positively correlated with self-reported ‘yearning’, but not with time since death, participant age, or positive/negative affect (mood, outlook).
• loneliness^(26.) too, due to loss of a loved one, is associated with altered activity in similar brain regions, leading to alterations in motivation and stress reactivity. Although loneliness is a common experience for grieving individuals, research using humans and animal models suggest that the loneliness state during this period is unique from the experience of loneliness in the absence of loss. (This is likely due to the structural and neurochemical changes that occur during the formation (and subsequent maintenance) of a strong bond/relationship that appears to be more rewarding, and therefore harder to get over, than isolation from peers).

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