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Understanding and Aiding People Suffering from Prolonged Grief Disorder Holly G Prigerson, PhD, Paul K Maciejewski, PhD Directors, Center for Research.

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Presentation on theme: "Understanding and Aiding People Suffering from Prolonged Grief Disorder Holly G Prigerson, PhD, Paul K Maciejewski, PhD Directors, Center for Research."— Presentation transcript:

1 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

2 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:

3 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

4 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)

5 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

6 SymptomsPGDDepAnx depressed.10.71-.31 blues.07.66-.16 anxious-.18-.22.52 nervous-.13-.22.88 yearn.62.21.02 intrusive thoughts.68.26-.10 ID symptoms.77-.03.02 drawn->reminders.71.15-.12 feel presence.82-.02-.08

7 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

8 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 loss 4. Inability to trust others since the loss 5. Bitterness or anger related to the loss 6. Difficulty moving on with life (eg, making new friends, pursuing interests); feeling stuck in grief 7. Numbness (absence of emotion) since the loss 8. Feeling that life is unfulfilling, empty, and meaningless since the loss 9. Feeling stunned, dazed or shocked by the loss

9 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

10 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

11 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

12 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?

13 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

14 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

15 Module 1: Exercise #1 Evaluate 1 st Video

16 Module 1: Exercise #2 Sort symptoms of grief, depression, and traumatic distress

17 Module 1: Exercise #3 Evaluate 2 nd Video

18 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

19 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

20 Module 2: Exercise #1 Personal loss history

21 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*

22 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

23 Dependent Relationships  Poor Bereavement Adjustment Close, dependent, harmonious relationships create heightened risk for PGD (vanDoorn, Johnson, Carr, Lai)

24 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

25 Childhood Separation Anxiety & Psychiatric Disorders in Bereaved Persons DxOR a 95% CI PGD4.20 (1.42-12.42) ** MDD 1.42 (0.49-4.16) PTSD1.20 (0.29-5.01) GAD2.18 (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

26 Bereavement Dependency 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

27 Module 2: Exercise #2 Personal attachment style

28 Video-clip

29 Module 2: Exercise #3 Personal assessment for PGD

30 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

31 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)

32 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

33 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

34 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= 1X/day

35 Maciejewski, Zhang, Block, Prigerson JAMA 2007


37  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

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

39 Module 3: Exercise #2 Brainstorm cultural influences on adaptations to loss

40 Worldwide Research on PGD 1, 20 12 14 13 2 18 5 ۩ 15 4 6 7 8, 17, 19 9 16 3 10 11

41 Module 3: Health Consequences of Prolonged Grief Disorder (PGD) or Why should clinicians care about PGD?

42 PGD at 6 months Predicts Impairment at 13 Months Family Health ProjectPGD at 6 Months 13 months Outcome a OR Hospitalization b 1.32 Major Health Event1.16 (heart attack, cancer, stroke) Accidents 1.27 Altered Sleep8.39 Smoking c 16.7 Eating7.02  High Blood pressure1.11  Controlling for pre-loss outcome measure, depression, anxiety, age and sex.  At 25 mos: cancer, cardiac probs, alcohol probs, suicidality

43 13-24 months post-lossPGD Yes PGD No MDD, PTSD or GAD55.9%44.1% Suicidal Ideation30.8%10.0 Functional Disability72.735.0 Low Quality of Life50.014.7 RR 8.86*** 5.61*** 2.01** 5.70*** Yale Bereavement Study Disability associated with 6-12 mo PGD for those w/o MDD, PTSD, GAD

44 Disability of PGD by Temporal Subtype OutcomeRR for Outcome associated with … 13-24 moAcute (15/172) Delayed (6/172) Chronic (12/172) Delayed or Chronic (28/242) MDD, PTSD or GAD 1.543.8611.58***10.19*** Disturbed Sleep3.0911.58***3.864.59** Suicidal Ideation1.974.93***3.29*4.44*** Functional Disability 0.511.541.401.64** Low Quality of Life 0.763.78***2.58*3.17***

45 Population-based sample of 449 Swedish parents who lost a child to cancer 4 to 9 years earlier (Kreicbergs et al.JCO, 2008)

46 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?

47 Module 4: Interventions for PGD

48 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?

49 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

50 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

51 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

52 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

53 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 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

54 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

55 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

56 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

57 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

58 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

59 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

60 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

61 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)

62 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

63 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



66 HEAL Outcome Data Time 1Time 2 WaitlistImmediateWaitlistImmediate MSDM M M Time X Conditiond PG-1334.997.4634.398.1132.849.1124.708.33F(1, 74.10) = 29.04**1.19 BDI37.658.0138.088.2036.158.6730.807.60F(1, 72.63) = 14.19**.79 PCL38.3311.2839.7311.9937.3112.7428.1110.06F(1,71.87) = 27.68**1.02 BAI31.527.5235.2211.1630.316.7829.189.39F(1,73.99) = 10.68*.53 Note. *p<.01. **p<.001. nχ2χ2 p Pre-test25----- Post-test610.1290.001 6-week follow-up511.6210.001 3-month follow-up*28.1420.004 *comparison for the immediate group PGD Caseness Findings

67 Video-clip

68 “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

69 Module 4: Exercise #3 Devise a treatment plan for person in 3 rd Video

70 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:

71 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

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