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
At the end of this workshop you should know:
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
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
depressed
blues
anxious
nervous
yearn
intrusive thoughts
ID symptoms
drawn->reminders
feel presence
PGD
.10
.07
-.18
-.13
.62
.68
.77
.71
.82
Dep
.71
.66
-.22
-.22
.21
.26
-.03
.15
-.02
Anx
-.31
-.16
.52
.88
.02
-.10
.02
-.12
-.08
Criteria for PGD
A. 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.
1.
2.
3.
4.
5.
6.
7.
8.
9.
Cognitive, Emotional, Behavioral Symptoms:
(5+/9 daily or to disruptive degree)
Confusion about one’s identity ( role in life or diminished sense of self;
feeling that a part of oneself has died)
Difficulty accepting the loss
Avoidance of reminders of the reality of the loss
Inability to trust others since the loss
Bitterness or anger related to the loss
Difficulty moving on with life (eg, making new friends, pursuing
interests); feeling stuck in grief
Numbness (absence of emotion) since the loss
Feeling that life is unfulfilling, empty, and meaningless since the loss
Feeling stunned, dazed or shocked by the loss
Diagnostic Criteria for PGD
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)
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
Making the Distinction:
Why is PGD not Major Depressive Disorder?
• 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 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
Bowlby, 1982
• 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
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 symptomatology
Dependency on deceased *
Parental loss, abuse or serious neglect in childhood
Parental control
Separation 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 Study
Study: 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 elderly
Saavedra 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
Van Doorn et al. 1998
Marital Quality
r
•
•
•
•
•
MDD
PGD
p
r
p
feelings of security
.47 .005
.15
ns
dependency on partner
.43 .001
.06
ns
confiding in partner
.43 .001
.02
ns
active emotional support
.60 .0001
.18
ns
combo security, confiding,
.69 .0001
.23
ns
.39 .01
.03
ns
support
• Overall Quality of Marriage
Childhood Separation Anxiety & Psychiatric
Disorders in Bereaved Persons
Dx
OR a
95% CI
PGD
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
0.16
Dependency
on Deceased
Bereavement
Dependency
Parental
Control
0.19
0.43
Prolonged
Grief Disorder
Dyadic
-0.03
Adjustment
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
Indicator Rating
5.0
Prigerson, Maciejewski BJP 2010
Acceptance
4.0
Yearning
Grief
3.0
Disbelief
Sadness
2.0
Anger
1.0
0
2
4
6
8
10
12
14
16
18
20
22
24
Time From Loss (months)
 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
Grief Resolution for those who do and do not meet criteria for PGD
Grief
score
50
Prolonged Grief
1
40
1
1
11 1
11
1
11 1 111 1 1
1
30
1
1
1
1
1
1
11
1
00
0
0
0 00 0 0 00
00
000
0
0 0 0 0000000000
0 0 0
0 00 0 0 0 0 0 0 0
0 00
0 0
000
0
0 0
00
0
0
0 0
0
10
1
1 1
1
1
20
1
1
0
Not Prolonged Grief
0
0
0
0 00 0
0
0
0 0
0
00 0 0
0
0
0
0
0
0
10
20
30
40
Months from the death
50
60
Module 3: Exercise #2
• Brainstorm cultural influences on adaptations to loss
Worldwide Research on PGD
7
9
10
۩
13
1, 20
8, 17, 19
12
11
6
15
14
5
16
4
18
2
3
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
Yale Bereavement Study
Disability associated with 6-12 mo PGD
for those w/o MDD, PTSD, GAD
13-24 months post-loss
PGD
Yes
PGD
No
RR
MDD, PTSD or GAD
Suicidal Ideation
Functional Disability
Low Quality of Life
55.9%
30.8%
72.7
50.0
44.1%
10.0
35.0
14.7
8.86***
5.61***
2.01**
5.70***
Disability of PGD by Temporal Subtype
Outcome
13-24 mo
RR for Outcome associated with …
Acute
Delayed
Chronic
(15/172)
(6/172)
(12/172)
MDD, PTSD or
GAD
1.54
3.86
11.58***
10.19***
Disturbed Sleep
Suicidal Ideation
Functional
Disability
Low Quality of
Life
3.09
1.97
0.51
11.58***
4.93***
1.54
3.86
3.29*
1.40
4.59**
4.44***
1.64**
0.76
3.78***
2.58*
3.17***
Delayed or
Chronic
(28/242)
Mean Sick leave (months in last 5yrs, Adjusted for gender)
1.4
Mean sick leave (months)
1.2
1
0.8
0.6
0.4
0.2
0
Controls
A lot/com pletely
No/Little*
Worked trough grief
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 • What: what interventions are most
outweigh the costs?
• Who: which bereaved should be
targeted for intervention?
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
Worden, 2009
• 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
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 preloss grief (PG-12)
Benefits of preparation for the death:
Promotes accept of death, reduces grief
Opportunity to say goodbye
Fewer regrets
Result 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 intervention
Early intervention speedier rate of recovery
What Interventions Work? CBT-based Psychotherapies
Complicated Grief Therapy (Shear, 2005, 2014)
Psycho-ed about normal and CG
Dual 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: trauma
Exposure 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 made
Shear, 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 Project
Breitbart 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
HEAL’s Approach to Prevention
•
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 Outcome Data
Time 1
Waitlist
Time 2
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.
Means over time for Prolonged Grief
n
χ2
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
p
Mean PG-13 Score
PGD Caseness Findings
40.00
38.00
36.00
34.00
32.00
30.00
28.00
26.00
24.00
22.00
20.00
Pre-test
Post-test
6-week follow-up
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
You should now know:
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
Workshop Summary
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