Understanding and Aiding People Suffering from

Prolonged Grief Disorder

Holly G Prigerson, PhD, Paul K Maciejewski, PhD

Directors, Center for Research on End of Life Care

Weill Cornell Medical College, New York, NY, USA

1. How to diagnose PGD and distinguish it from Major Depressive Disorder and Posttraumatic Stress

2. Who is at risk for PGD

3. Outcomes of PGD – why clinicians should care

4. Core therapeutic issues in PGD

At the end of this workshop you should know:

Workshop Overview

• Module 1: What is Prolonged Grief Disorder (PGD)?

• Module 2: Grief in relation to attachment and loss

• Module 3: Grief as a process

• Module 4: Interventions for PGD

Module 1: What is Prolonged Grief Disorder (PGD)?

• What are the diagnostic criteria for PGD?

• Symptoms and diagnostic criteria

• Goals

• Learn how to distinguish normal grief from PGD

• Learn how to diagnose PGD and distinguish it from Major Depressive Disorder (MDD) and Posttraumatic Stress Disorder (PTSD)

Prolonged Grief Disorder

Pathological reaction to loss distinct from bereavement-related depression and anxiety

Unlike normal grief, individuals with PGD appear to be “stuck” in their grief and protest the reality of the loss

Prevalence is ~10% following normal circumstances of loss

Symptoms PGD Dep Anxdepressed .10 .71 -.31blues .07 .66 -.16anxious -.18 -.22 .52nervous -.13 -.22 .88yearn .62 .21 .02intrusive thoughts .68 .26 -.10ID symptoms .77 -.03 .02drawn->reminders .71 .15 -.12feel presence .82 -.02 -.08

Criteria for PGDA. Loss: Loss of something loved

B. Separation Distress: (to a daily, distressing, or disruptive degree)

1.  Yearning, pining longing for the lost person

2. Intense feelings of emotional pain, sorrow, or pangs of grief

C. Cognitive, Emotional, Behavioral Symptoms:

(5+/9 daily or to disruptive degree)1.      Confusion about one’s identity ( role in life or diminished

sense of self; feeling that a part of oneself has died)

2.      Difficulty accepting the loss 3.      Avoidance of reminders of the reality of the loss4.      Inability to trust others since the loss5.      Bitterness or anger related to the loss6.      Difficulty moving on with life (eg, making new friends,

pursuing interests); feeling stuck in grief

7.      Numbness (absence of emotion) since the loss8.      Feeling that life is unfulfilling, empty, and meaningless

since the loss9.      Feeling stunned, dazed or shocked by the loss

D.  Duration:   At least 6 months elapsed since the loss

E.Impairment: The above symptomatic disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (e.g., domestic responsibilities)

Diagnostic Criteria for PGD

Making the Distinction: How is PGD Different from

Normal Grief?• It is normal for a bereaved person to be very upset in the months after the loss

• It is normal to miss the person who died greatly

• It is normal to cherish the memories of the deceased person

• It is normal to feel upset during anniversaries of the death, the

deceased’s birthday or wedding anniversary

• It is normal not to feel sad and tearful when reminded of the loss

Making the Distinction: How is PGD Different from

Normal Grief?• It is not normal for a bereaved person to feel

unsure of who s/he is or where s/he fits in after the loss

• It is not normal to be chronically disinterested or disengaged from others and the world around him/her

• It is not normal to feel that there is no joy or hope for the future without the deceased

• PGD uniquely includes “separation distress” (yearning and pining for the deceased), which is not seen in other mental disorders

• MDD is characterized more by sadness than PGD

• PGD symptoms are more stable over time than MDD symptoms

Making the Distinction: Why is PGD not Major Depressive

Disorder?

Making the Distinction:

Why is PGD not PTSD?• Yearning is only found in PGD and not present in PTSD

• In PGD, memories of the deceased are bittersweet – at once comforting but also distressing because they remind the bereaved of the loss

• In PTSD, the world is a scary place with danger at every turn and fear is more prominent than PGD’s sorrow over being without a primary source of security and safety

Making the Distinction:

Why is PGD not PTSD?In PGD, the precipitating event of “loss” is a universal experience

PGD symptoms are related to

• Attachment to the deceased

• Difficulty processing the reality of the loss and reorienting in the world without the deceased

In PGD, there is always an impact on social support network

Fear and threat are less prominent in PGD; sadness is less prominent in PTSD

Adapted from Lichtenthal 2014

Module 1: Exercise #1

• Evaluate 1st Video

Module 1: Exercise #2

• Sort symptoms of grief, depression, and traumatic distress

Module 1: Exercise #3

• Evaluate 2nd Video

Module 2: Grief in relation to loss and attachment

• Topics

• Overview of Attachment Theory

• Empirical support of the role of dependency in PGD onset

• Goals

• Understand secure and insecure attachment styles

• Appreciate the role of attachment style in risk for PGD

Attachment Theory

• Internal working models of attachment (insecure vs. secure) developed in childhood shape individuals’ responses to separation and loss

• Attachment figures help us regulate our emotions and fears

• Separation and loss rupture attachment bonds

• Attachment styles affect how a person will react to loss, aka grief

Bowlby, 1982

Module 2: Exercise #1

• Personal loss history

Specific Risk Factors/Clinical Correlates for PGD

Sociodemographics:Kinship relationships -- parents/spouses * (*= not MDD)African Americans *

Biomarkers:No shortened REM latency * (EEG)Brain imaging * (f/MRI) –nucleus accumbens; smaller brain volume

Psychosocial Factors:Pre-loss PGD symptomatologyDependency on deceased *Parental loss, abuse or serious neglect in childhoodParental controlSeparation anxiety in childhood *Preoccupation with relationships; need for approval*(insecure attachments)Preference for lifestyle regularity * - averse to change, lack flexibility Lack of preparation for the death *Hospitalized (compared with home hospice) deaths*

Cognition, Structural Brain Changes and Complicated Grief.

A Population-Based StudyStudy: Rotterdam Study “no grief” (control group, N=4731), “normal grief” (N=615), “complicated grief” (N=155)

Result: CG participants had lower scores for Letter-digit test, Word fluency test, and smaller brain volumes than controls

Conclusion: CG participants performed poorly on cognitive tests and had a smaller total brain volume. This suggests there is a neurological correlate of complicated but not of normal grief in the elderlySaavedra Pérez …Tiemeier Psychological Medicine 2014

Dependent Relationships Poor Bereavement Adjustment

Close, dependent, harmonious relationships create heightened risk for PGD

(vanDoorn, Johnson, Carr, Lai)

Caregiver’s Relationship to Dying Patient and Risk for PGD vs. MDD

Marital Quality PGD

r p

• feelings of security .47 .005

• dependency on partner .43 .001

• confiding in partner .43 .001

• active emotional support .60 .0001

• combo security, confiding, .69 .0001

support

• Overall Quality of Marriage .39 .01

MDD

r p

.15 ns

.06 ns

.02 ns

.18 ns

.23 ns

.03 ns

Van Doorn et al. 1998

Childhood Separation Anxiety & Psychiatric

Disorders in Bereaved Persons

  Dx OR a

95% CIPGD 4.20 (1.42-12.42)**

MDD 1.42 (0.49-4.16)

PTSD 1.20 (0.29-5.01)

GAD 2.18 (0.43-11.19)a Controlling for age, sex, race,

childhood abuse or neglect, prior psych diagnosis; N=290 Vanderwerker, Jacobs, Parkes, Prigerson JNMD 2006

BereavementDependency

Dependency on Deceased

Dyadic

Adjustment

Prolonged

Grief Disorder

Parental

Control

-0.03

0.19

0.16 0.43

0.06

Johnson JG, Zhang B, Greer JA, Prigerson HG. JNMD 2007

Module 2: Exercise #2

• Personal attachment style

Video-clip

Module 2: Exercise #3

• Personal assessment for PGD

Module 3: Grief as a process

• The course of grief• States of grief

• Pathways to acceptance (normal grief)

• Pathways to problems (Prolonged Grief Disorder)

• Goals• Appreciate the role of time in adjustment (or maladjustment) to

loss

Module 3: Exercise #1

• Discuss with workshop participants attitudes toward bereavement adjustment

• What is normal

• What is not, when does grief become pathological?

• Cultural considerations (role of French culture, religious and other rituals and influences on how people adjust to the death of a loved one)

Question: How do you know if a grief reaction is normal?

Answer: Time will tell. Time …

Heals most wounds path of acceptance

~90% of bereavement reactions are “normal”

Most people gradually adjust/accommodate to the loss

But time …doesn’t heal all wounds path to Prolonged Grief Disorder

(PGD) ~10% will follow an unending path of

sorrow These are the people who may

benefit from help

For typical bereavement (e.g., late-life widowhood after natural death) …

Most bereaved people accept death, even initially

Acceptance increases with time from loss

On scale where:

1= < 1/mo; 2= monthly; 3= weekly; 4=daily; 5= > 1X/day

Maciejewski, Zhang, Block, Prigerson JAMA 2007

Maciejewski, Zhang, Block, Prigerson JAMA 2007

1.0

2.0

3.0

4.0

5.0

0 2 4 6 8 10 12 14 16 18 20 22 24

Time From Loss (months)

Ind

ica

tor

Ra

tin

gDisbelief

Yearning

Anger

Sadness

Acceptance

Grief

Grief is wanting something you love but can’t have

Acceptance is letting go of wanting/craving,

is associated with declining emotional distress over the loss

Prigerson, Maciejewski BJP 2010

Grief Resolution for those who do and do not meet criteria for PGD

Grief score

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10

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50

Months from the death

0 10 20 30 40 50 60

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0 0 0 0 0

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1 1 1 1 1

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1 1 1

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1 1 1 1

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Prolonged Grief

Not Prolonged Grief

Module 3: Exercise #2

• Brainstorm cultural influences on adaptations to loss

Worldwide Research on PGD

1, 20

12

14

13

218

5

۩

154

6

7

8, 17, 19

9

16 3

10

11

Module 3: Health Consequences of Prolonged Grief Disorder (PGD)

or

Why should clinicians care about PGD?

PGD at 6 months Predicts Impairment at 13 Months

Family Health Project PGD at 6 Months

13 months Outcome a OR

Hospitalizationb 1.32

Major Health Event 1.16

(heart attack, cancer, stroke)

Accidents 1.27

Altered Sleep 8.39

Smoking c 16.7

Eating 7.02 High Blood pressure 1.11

Controlling for pre-loss outcome measure, depression, anxiety, age and sex. At 25 mos: cancer, cardiac probs, alcohol probs, suicidality

13-24 months post-loss PGD Yes

PGD No

MDD, PTSD or GAD 55.9% 44.1%

Suicidal Ideation 30.8% 10.0

Functional Disability 72.7 35.0

Low Quality of Life 50.0 14.7

RR

8.86***5.61***2.01**5.70***

Yale Bereavement StudyDisability associated with 6-12 mo PGD

for those w/o MDD, PTSD, GAD

Disability of PGD by Temporal SubtypeOutcome RR for Outcome associated with …

13-24 mo Acute (15/172)

Delayed (6/172)

Chronic (12/172)

Delayed or Chronic (28/242)

MDD, PTSD or GAD

1.54 3.86 11.58*** 10.19***

Disturbed Sleep

3.09 11.58*** 3.86 4.59**

Suicidal Ideation

1.97 4.93*** 3.29* 4.44***

Functional Disability

0.51 1.54 1.40 1.64**

Low Quality of Life

0.76 3.78*** 2.58* 3.17***

0

0.2

0.4

0.6

0.8

1

1.2

1.4

Controls A lot/completely No/Little*

Me

an

sic

k le

av

e (m

on

ths

)

Worked trough grief

Mean Sick leave (months in last 5yrs, Adjusted for gender)

Population-based sample of 449 Swedish parents who

lost a child to cancer 4 to 9 years earlier (Kreicbergs et al.JCO, 2008)

Module 3: Exercise #3

• Describe prolonged grief and its consequences in someone you know

• How has grief affected someone you know, specifically, his/her ability to function?

Module 4: Interventions for PGD

Evidence-based Recommendations for Bereavement Interventions:

Why, Who, When, & What

• Why: do benefits of intervening outweigh the costs?

• Who: which bereaved should be targeted for intervention?

• What: what interventions are most effective, for whom?

• When: how soon to intervene after loss?

Why Intervene? On Whom to Intervene? Vast majority fine and gradually . . .

Move from very upset, disturbed to diminished distress, eventual adjustment

Questionable whether would benefit from intervention

Significant minority not fine and time won’t heal; At risk for enduring distress and dysfunction

(“eternal path of sorrow”) Interventions improve their quality of life;

potentially reduce adverse outcomes: Social withdrawal, suicidality, alcohol abuse,

high blood pressure, functional disability, loss of productivity

Need to figure out who is adapting, who isn’t

Task Model of Adjustment to Loss

• To accept the reality of the loss

• To work through the pain of grief

• To adjust to the environment without the deceased

• To emotionally relocate the deceased and move forward with life

Worden, 2009

Dual Process Model of Coping

• Loss-oriented mode involves confrontation with grief and loss

• Restoration-oriented mode involves reengagement in life

• Natural way of adapting to loss involves oscillation between these two modes

Stroebe & Schut, 1999

Signs of adaptation

While often profoundly painful, the majority of individuals adapt to the loss over time:

• Able to acknowledge the loss

• Able to transform their relationship to the deceased

• Able to reengage in work, leisure, and creative activities

• Able to maintain and develop personal relationships

• Able to consider their lives and the future as potentially meaningful and satisfying

Bonanno, Wortman, & Nesse, 2004; Lichtenthal, Prigerson, & Kissane, 2010; Lichtenthal et al., 2011

When to intervene?

Really Early Intervention:Pre-loss in caregivers who are very dependent and have high levels of pre-loss grief (PG-12)Benefits of preparation for the death:

Promotes accept of death, reduces grief Opportunity to say goodbyeFewer regretsResult in better quality of death better bereavement outcomes

Litz’ Healing Experiences After Loss (HEAL) Litz suggests early post-loss period a time of re-establishing healthy routines

Online, CBT-based preventive interventionEarly intervention speedier rate of recovery

What Interventions Work? CBT-based Psychotherapies

Complicated Grief Therapy (Shear, 2005, 2014)Psycho-ed about normal and CGDual process of adaptive coping – adjust to loss & restoration of satisfying life (goals defined with motivational enhancement)Model: Grief is a trauma, people avoid trauma; exposure-based therapy reduces/desensitizes distress re: traumaExposure for traumatic avoidance – imagined conversation with deceased; retelling the death scene

Prolonged Grief Therapy (Bryant, 2014)CBT with exposure therapy where patients relive the experience of a death of a loved one, resulted in greater reductions in measures of prolonged grief disorder (PGD) than CBT alone

O’Donnell Tanzanian orphans 2014; Rosner German outpatients 2014; Boelen 2007

Effective Approaches

• Cognitive restructuring techniques help the griever to identify problematic aspects of the loss and to revise their understanding of them

• Exposure techniques typically involve imaginal components, such as telling the story of the loss, and in-vivo components, such as confronting avoidance of places or people associated with the loss

Cognitive-Behavioral Therapy for PGD

Address core processes believed to underlie symptoms

1) Conceptually process and integrate loss into existing autobiographical knowledge

2) Restructure maladaptive beliefs and interpretations

3) Reduce and replace avoidance strategies

Address common cognitive errors and use meaning reconstruction

Rebuild previously held assumptions to incorporate the loss

Exposure (value added)

Boelen, van den Hout, & van den Bout, 2006; Bryant et al., 2014; Fleming & Robinson, 2001

Complicated Grief Treatment: Loss-Focused Procedures

Use revisiting to help comprehend reality, to think of the death at will, to identify “hot spots” or impasses, to reduce emotional intensity, and to create a coherent story

Begin at terminal event

Rate SUDS

Keep brief so there is sufficient time to process in session

Identify maladaptive beliefs and difficult images with repetition, processing, imaginal rehearsal with new scenarios, and restructuring can result in a cognitive shift

Review memories and pictures

Imaginal conversations after some progress has been madeShear, Frank, Houck, & Reynolds, 2005; Shear et al., 2014

Restoration-Focused Procedures

• Work on aspirational goals including dreams, relationships, and self-care to enhance autonomy and foster positive emotions

• Use motivational interviewing to explore what individual would do if grief severity were reduced

• Daily Activities Exercises

• Meet with significant other for additional perspective, to educate, and to enlist support

Meaning-Centered Grief Therapy (MCGT)

Adaptation of Breitbart’s Meaning-Centered Psychotherapy, similarly focusing on the ability one has to choose their attitude toward suffering

Assists with reconnection to valued sources of meaning (creative, experiential, and attitudinal)

Applies Neimeyer’s meaning reconstruction to facilitate meaning-making through examination of cognitive schemas

Assists with legacy building and development of one’s story, as well as the deceased’s story

Help maintain connection to the deceased

Example MCGT Exercises

• Meaning of emotional reactions

• Mindfulness and guided imagery

• Imaginal conversation about how influenced by deceased

• Author of own story

• Letter writing of how want to keep deceased part of story

• Who Am I? (before, as caregiver, now, hope for future)

• Living Legacy ProjectBreitbart et al., 2012; Lichtenthal, 2012 ; Lichtenthal & Breitbart, 2012; Lichtenthal & Neimeyer, 2012

Interventions incorporating CBT have been developed for PGD • Cognitive-Behavior Therapy for grief (Boelen et al., 2006)

• Internet-based treatment (Wagner et al., 2005)

• Meaning reconstruction (Neimeyer, 2002, 2012)

• Complicated Grief Treatment (CGT; Shear et al., 2005)

• Meaning-Centered Grief Therapy (Lichtenthal & Breitbart , in press)

• Prolonged Grief Therapy (Bryant, 2014)

• Healing Experiences After Loss (HEAL; Litz et al. 2014)

HEAL (Healthy Experiences After Loss)

• PI: Litz; NIMH R-34 indicated prevention

• Internet-based, professional-assisted

• Online, CBT-based preventive intervention

• Wait-list controlled RCT

• Targeting bereaved at Dana Farber

• 18 logons 6-weeks

• Modules: promote self-care, accommodation of loss, enhanced self-efficacy, pleasurable activities, reattachment

• Web interface text-driven but interactive

• Homework-based approach

• Professional oversight

HEAL’s Approach to Prevention

HEAL Outcome DataTime 1 Time 2

Waitlist Immediate Waitlist Immediate

M SD M SD M SD M SD Time X Condition d

PG-13 34.99 7.46 34.39 8.11 32.84 9.11 24.70 8.33 F(1, 74.10) = 29.04** 1.19

BDI 37.65 8.01 38.08 8.20 36.15 8.67 30.80 7.60 F(1, 72.63) = 14.19** .79

PCL 38.33 11.28 39.73 11.99 37.31 12.74 28.11 10.06 F(1,71.87) = 27.68** 1.02

BAI 31.52 7.52 35.22 11.16 30.31 6.78 29.18 9.39 F(1,73.99) = 10.68* .53

Note. *p<.01. **p<.001.

  n χ2 p

Pre-test 25 -----

Post-test 6 10.129 0.001

6-week follow-up 5 11.621 0.001

3-month follow-up* 2 8.142 0.004

*comparison for the immediate group

PGD Caseness Findings

Pre-test Post-test 6-week follow-up20.0022.0024.0026.0028.0030.0032.0034.0036.0038.0040.00

Means over time for Prolonged Grief

Mean P

G-1

3 S

core

Video-clip

“optimal gains with PGD patients are achieved when the emotions associated with the memories of the death and the sequelae of the loss are fully accessed. ... Despite the distress elicited by engaging with memories of the death, this strategy does not lead to aversive responses. In light of evidence that many interventions provided to grieving people are not empirically supported, the challenge is to foster better education of clinicians through evidence-supported interventions to optimize adaptation to the loss as effectively as possible,"

Bryant “Treating PGD: A Randomized Clinical Trial” JAMA Psychiatry 2014

Module 4: Exercise #3

• Devise a treatment plan for person in 3rd Video

1. How to diagnose PGD and distinguish it from Major Depressive Disorder and Posttraumatic Stress

2. Who is at risk for PGD

3. Outcomes of PGD – why clinicians should care

4. Core therapeutic issues in PGD

You should now know:

We hope you now have a better understanding of what PGD is, how to distinguish it from normal grief, MDD, and PTSD, know who is at risk, appreciate why it is worth diagnosing and treating, and have some insight into how to approach treatment of PGD.

We are interested in your reactions and feedback.

Merci beaucoup!Holly & Paul

With special thanks to Wendy Lichtenthal, Ph.D., for her collegiality and generosity in sharing materials for this

workshop

Workshop Summary