1. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Grief and Loss in Individuals with Dual Diagnosis: A Guide for MH and DD Professionals Lara Palay, MSW, LISW-S

2. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Acknowledgments Special thanks to Dr. Julie Gentile, MD; Carroll Jackson, LISW-S; and the staff of Hospice of the Western Reserve for their contributions, comments and expertise in the preparation of this material. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

3. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities “As any poet or psychologist will tell you, memory is both the curse of grief and the eventual talisman against it; what at first seems unbearable becomes the succor that that can outlast pain.” -Gail Caldwell, New York Times, 2011 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

4. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities DSM IV-R criteria (“mental retardation” no longer current language) Mild 50/55 – 70 points 85% of individuals with MR are in the Mild range Moderate 35/40 – 50/55 points 10% of individuals with MR are in the Moderate range Severe 20/25 – 35/40 points 3-4% of individuals with MR are in the Severe range Profound –<20/25 points –1-2% of individuals with MR are in the Profound range Mental Illness/Developmental Disabilities Coordinating Center of Excellence

5. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Co-occurrence of mental illness and developmental disability (DD) is not only possible but common. Research indicates that the prevalence of mental illness in this population is higher than that found in the general population. Estimates vary, but incidence is somewhere between 40- 70% (in the general population rate is approximately 19%). Mental Illness/Developmental Disabilities Coordinating Center of Excellence

6. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities How do individuals with dual diagnoses grieve losses? In much the same way all people grieve. “The response of people with learning disabilities to bereavement is essentially the same as in non-disabled people”. Oswin,1991 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

7. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Why is it important to focus on grief and loss in individuals with dual diagnoses? Because it affects their functioning. “There is higher incidence of psychiatric illness following bereavement because of impaired adaptive functioning”. McLoughlin, 1986 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

8. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Approximately 50% admissions to hospitals were related to grief or loss issue Ambivalent relationships may be related to more complicated grief processes Marked behavior and mood changes following death; 50% of pts with severe behavior problems had loss of a close contact prior to onset; most caregivers minimized or misunderstood reaction Dodd et al, 2005 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

9. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Do individuals with dual diagnoses get to participate in healing rituals to deal with grief? Not often. Only 16% of bereaved clients had opportunity to visit grave or place were ashes were scattered Only 16% of clients received formal session(s) of bereavement counseling Hollins et al, 1996 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

10. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities What does this mean? Non-involvement [of people with I/DD] in rituals is striking Increased scores of aberrant behavior in bereaved group clearly indicate significant/disturbing impact of loss of an important attachment figure “In summary, [there were] significantly more cases of psychopathological morbidity in the bereaved group” Hollins et al, 1996 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

11. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities And finally… 72% of institutional staffers felt clients had not been affected in any way by bereavement Hollins et al, 1996 We treat grieving individuals with dual diagnoses differently, and that’s a problem. But often we don’t even see the problem. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

12. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Rando’s Six Tasks of Grieving Mental Illness/Developmental Disabilities Coordinating Center of Excellence

13. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Recognize (avoidance phase) Recognize the loss acknowledge the loss understand that it has happened Mental Illness/Developmental Disabilities Coordinating Center of Excellence

14. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities React, Recollect and Relinquish (confrontation phase) React to the separation Experience pain Feel, identify, accept and give some form of expression to all the psychological reactions to the loss Identify and mourn secondary losses Mental Illness/Developmental Disabilities Coordinating Center of Excellence

15. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities React, Recollect and Relinquish (confrontation phase) con’t. Recollect and re-experience the deceased and the relationship Review and remember realistically Revive and re-experience the feelings Relinquish the old attachments to the deceased and the old assumptive world

16. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Readjust and Reinvest (accommodation phase) Readjust to move adaptively into the new world without forgetting the old Revise the assumptive world Develop a new relationship with the deceased Adopt new ways of being in the world Form a new identity Reinvest in life Mental Illness/Developmental Disabilities Coordinating Center of Excellence

17. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities How might these tasks present challenge for individuals with dual diagnoses? Mental Illness/Developmental Disabilities Coordinating Center of Excellence

18. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Recognition These individuals may lack opportunities to participate in rituals that facilitate recognition (funerals, viewings, sitting Shiva, mourning clothes, covered mirrors, other outward reminders, etc.) This may be made worse if others fail to recognize the individuals’ loss (special status of griever, cards/notes) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

19. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Reaction The individual may lack language for feelings, or may have been discouraged from expressing feelings. Family and caregivers may misunderstand that having dual diagnoses does not prevent understanding a loss. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

20. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Relinquishing This may be difficult depending on the individual’s developmental stage or understanding of object permanence. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

21. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Readjustment The individual may lack support, help with building new skills and understanding new assumptions about the world. He or she may struggle to adapt to real secondary losses related to the role the person played in life, or struggle to adjust to a new environment. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

22. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Reinvestment The individual may be less likely to form significant attachments to others, especially with staff turnover, lack of social connection, and other isolating factors. This is also challenging if the individual lacks training and the chance to practice relationship skills. Finally, lack of support in finding meaning (attending church, participating in charity work, pursuing goals) can make this task hard to complete. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

23. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities How can mental health and DD professionals support grieving individuals with dual diagnoses? Suggestions for each task of grieving Mental Illness/Developmental Disabilities Coordinating Center of Excellence

24. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities What needs to be in place? Mechanisms and rituals for grief (as for everyone else) Supportive people recognizing and understanding grief (including examining one’s own grief issues!) Help with building language, especially for feelings Help with skills and opportunities for later tasks Intervention as needed for complicated bereavement Mental Illness/Developmental Disabilities Coordinating Center of Excellence

25. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Recognition Participation in family and social events and rituals. Encourage flexibility with staffing to allow for individual to decide when he or she needs a break, or wants to leave early, etc. Prepare the individual thoroughly with social stories, role- playing, etc. Encourage recognition from others (cards, flowers). Assist in understanding of length of each task/phase of grief. Explore using visible signs of grieving (picture of loved one on door, e.g.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

26. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Reacting Feelings, feelings, feelings! Identify words and signals for emotions, and encourage the individual and his or her supporters to practice using them. Point out when feelings rise and fall. Remind the individual that these feelings, though painful, do not last forever or destroy the individual. Help the individual breathe and watch the feeling come and go. For coping with anger, consider the following model: –I’m angry… –I miss (feel sad about)… –I wish… –Instead of having what I wish for, I can…

27. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Recollecting and Re-Experiencing Encourage stories, remembrances (do not push) Encourage creation of mementos if these have been lost (scrapbooks, memory boxes, draw pictures, write stories) Make visits available to meaningful places Work on anniversary and other rituals to mark place of loved one (mom’s picture at birthday table, special candle, etc.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

28. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Relinquishing Explore concepts of death as the individual understands it. Repeat ideas such as loved ones are gone but still in one’s heart, etc. Think about questions of self and role: Am I still the (son, daughter, sibling, friend)? Who will love/take care of me? Help the individual to build the skills needed in new environments or with a new conception of self Explore and help the individual to understand the new assumptive world (for example, “Things will not always stay the same, but I can cope with change”.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

29. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Reinvestment Encourage efforts to build emotional connections with others Help to find meaningful activities or involvement (volunteering at charity, involvement in spiritual community) Continue to explore ideas of identity, spirituality and purpose Mental Illness/Developmental Disabilities Coordinating Center of Excellence

30. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Remember that losses can come in many forms, especially for individuals with dual diagnoses, including Separation from family/family home Medically ill parents/caretakers Separation from neighbors and friends Divorce/relationship instability Abandonment by family Isolation because of sexual identity Language barriers Mental Illness/Developmental Disabilities Coordinating Center of Excellence

31. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To be in control To have a sense of purpose To reminisce To know the truth To be in denial To be comfortable To touch and be touched To laughter To cry and express anger To explore the spiritual To have a sense of family What are the rights of the people you work with? (Smith, 1997) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

32. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To be in control Control is often a central issue for people with dual diagnoses. These individuals often do not feel they have control of “normal” aspects of daily life: Where to live, with whom to associate, what work to do. People with dual diagnoses often feel control is outside them and may need to be encouraged to assert their own wishes and goals. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

33. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To have a sense of purpose For some individuals, this a regular part of life that can be enhanced or re-connected with, just as other people do. For others, life may lack purpose. Lack of access to meaningful work, lack of social/romantic/sexual outlets, lack of full participation in society can be longstanding contributors to this feeling. Caregivers need to be alert to opportunities to find purpose. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

34. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To reminisce Sometimes, people surrounding an individual with dual diagnoses seem to think that the individual doesn’t remember loved ones as typically-developing people do. These individuals are sometimes told “not to dwell” on losses or grief, or in fact on any negatively-perceived emotion. Reminiscing may be made harder if few possessions, keepsakes or mementos remain, as these individuals sometimes have to move frequently and live with little space for personal belongings. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

35. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To be in denial Family and caregivers may find it difficult to let the individual be in denial. They may be inclined to “make them face reality”. Supporters will need patience and sensitivity to discern if the individual truly does not comprehend and needs to be told in simpler or more concrete terms, or is choosing to deal with the truth gradually in his/her own way. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

36. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To know the truth On the opposite end of the spectrum, some family members or caregivers may wish to “protect” an individual with dual diagnoses. As noted above, lack of acknowledgement of grief, and possibly lack of preparation, can significantly contribute to emotional or psychiatric disturbance. People with dual diagnoses will generally understand death at a level comparable to his or her developmental age. (con’t.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

37. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities (con’t.). He or she may have been discouraged from talking about death, or have had questions brushed aside. Supporters will need to explore the individual’s basic understanding and beliefs, and consider doing some preparation or education, using role plays, social stories, story cards, etc. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

38. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To be comfortable Roommates, favorite staff, personal items and objects may help the individual to be comfortable. In palliative care for individuals approaching the end of life, a prescriber may encounter multiple psycho- tropics. Individuals with dual diagnoses are at greater risk for poly-pharmacy. Consultation with a dual diagnosis-trained psychiatrist may help. In prescribing for pain management, watch for over- or under-medication, which is common with this population. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

39. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To touch and be touched Human touch is as important for these as for any individual. Touching and hugging may be very familiar or unfamiliar, depending on the setting in which the individual lives (family home, group home, developmental center, etc.). However, be cautious of known traumatic stress that may make touch scary or triggering for an individual. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

40. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To laughter Yes! Mental Illness/Developmental Disabilities Coordinating Center of Excellence

41. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To cry and to express anger “Negative” emotions such as sadness and especially anger may be uncomfortable for caregivers and family members. Individuals with dual diagnoses are often discouraged from expressing these emotions and may have been distracted, invalidated, minimized or shamed. These individuals may also have issues communicating feelings due to lack of an emotional vocabulary, or general problems with verbal expression. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

42. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities (con’t.). Supporters may need to give explicit permission and encouragement to notice, name, explore and express feelings. Teaching names and gradations for feelings will be helpful. For individuals with expressive language or speech issues, consider drawing, sculpting, collages, play therapy techniques or music as means of expression. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

43. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To explore the spiritual Individuals with I/DD may or may not have access to his or her preferred form of worship. Explore his or her beliefs and encourage or facilitate expression and connection whenever possible. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

44. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities **For spiritual work** Consider exploring issues of spiritual pain that others may ignore (Groves and Klauser, 2005) : Relatedness pain Forgiveness pain Meaning pain Hopelessness pain Mental Illness/Developmental Disabilities Coordinating Center of Excellence

45. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities To have a sense of family If the individual is losing a parent or other caregiver, he or she may be understandably nervous about the impact on her or her living situation. In some instances, the family may try to shield the individual from gatherings or rituals that they deem “too upsetting”. Consider gently encouraging the family to explore ways to include the individual, perhaps with flexible participation, modified settings and/or lots of rehearsal and preparation (see below). Mental Illness/Developmental Disabilities Coordinating Center of Excellence

46. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Additional Issues Mental Illness/Developmental Disabilities Coordinating Center of Excellence

47. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Be careful with language and euphemism about dying, and encourage family and caregivers to do the same. Expressions like someone “got sick” or “went to sleep” can be taken literally, causing anxiety and distress (“If I go to sleep, I will die”). When dealing with feelings associated with grief, the individual may tolerate small doses of feelings and not stay deep for very long. Do not underestimate this as not needing to work through emotions. Small steps may be needed. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

48. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Four Basic Issues in Trauma and Grief (adapted from Duane Bowers, LPC; 2010) Who am I without…(my loved one)? Who am I not? What can I do (without my loved one)? What can I not do (without my loved one)? What do I feel? (also: How can I feel safe? How can I have my anger?) How can I make myself feel better? How do I feel better without my loved one? Mental Illness/Developmental Disabilities Coordinating Center of Excellence

49. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Do not ignore elements of trauma! What were circumstances of the loss and the aftermath of the loss? Did the individual experience intense fear or a threat to his or her well-being? If so, there may be traumatic stress related to the loss, and this may need to be treated first to allow grieving to occur. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

50. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Trauma-Informed Care: A Universal Precaution Research suggests that individuals with dual diagnoses are at very high risk for traumatic stress. Some researchers estimate that more than 90% of individuals experience some level of trauma in their lives (Sobsey, 1994). Trauma-informed care, particularly helping individuals to feel safe and in control, is a universal precaution for this population. Making sure someone feels safe and in control of his or her own life will not hurt anyone who does NOT have a trauma history. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

51. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities For someone with traumatic stress, a loss can revive old feelings of fear, sadness, anger or powerlessness. Agitation, irritability, hyper-vigilance, avoidance and withdrawal are normal and to be expected. Help family and caregivers to ensure the individual feels safe, loved and in control will usually help to reduce these behaviors over time. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

52. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Complicated Bereavement: Some Considerations Grief, like many other universal human experiences, is not an illness. With support and compassion from others, most people, with or without disabilities or mental illness, will grieve and eventually return to a normal range of feelings, functioning and attachments. In situations where grieving is prevented, delayed or otherwise obstructed, however, complicated bereavement can occur. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

53. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Categories of Complicated Bereavement (Rando, 1994) Absent Mourning Delayed Mourning Inhibited Mourning Distorted Mourning (angry type; guilty type) Conflicted Mourning Unanticipated Mourning Chronic Mourning Mental Illness/Developmental Disabilities Coordinating Center of Excellence

54. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Absent Mourning Absent mourning requires complete shock or complete denial This is unusual in general population; the incidence is not known in people with developmental disabilities What looks like absent mourning is more likely to be inhibited mourning Mental Illness/Developmental Disabilities Coordinating Center of Excellence

55. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Delayed Mourning Delayed mourning is a predictor of future complicated mourning This may occur due to factors such as lack of supports (a high risk in people with DD) Mourning may be experienced later, either deliberately (when ready) or when triggered by other losses Mental Illness/Developmental Disabilities Coordinating Center of Excellence

56. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Inhibited Mourning Some elements of inhibition are often experienced in uncomplicated mourning as well Often inhibition is incomplete; some parts of loss are mourned while others are not This may manifest as physical complaints or psychological problems Mental Illness/Developmental Disabilities Coordinating Center of Excellence

57. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Distorted Mourning Over-activity without sense of loss Display of symptoms belonging to deceased Psychosomatic illness Alteration of relationships with others Extreme hostility to particular others “Wooden”, formal appearance without schizoaffective illness Lasting loss of social interaction Self-harmful actions Agitated depression (italics mine) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

58. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Conflicted Mourning Conflicted mourning may follow initial absence of grief or even feelings of relief There are two recognized types of conflicted mourning: Extremely angry type Extremely guilty type This often occurs with conflicted relationships and unresolved emotional issues (i.e., the death of an abusive parent) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

59. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Unanticipated Mourning Unanticipated mourning results from a sudden, unexpected death This can also occur after an untimely death (young age, e.g.) Denial may be a very prominent feature of this type It may present as features of obsessive/compulsive disorder, hysteria, anxiety or bipolar mood disorder, including temporary psychosis In assessing unanticipated mourning, consider co-occurring trauma depending on the cause of death, proximity of the mourner, etc. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

60. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Indicators of Complicated Bereavement Pattern of vulnerability to, sensitivity toward or overreaction to experiences involving loss and separation Psychological and behavioral restlessness, oversensitivity, arousal, over-reactivity and feeling “geared up”; always needing to be occupied as if to avoid feeling Unusually high death anxiety focusing on self or loved ones. Excessive and persistent over-idealization of deceased or of relationship with deceased Mental Illness/Developmental Disabilities Coordinating Center of Excellence

61. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Indicators, Continued Rigid compulsive or ritualistic behavior that interferes with individuals freedom and well-being Persistent obsessive thoughts and preoccupation with deceased, elements of loss Inability to experience emotional reactions to loss typical to bereavement and/or uncharacteristically constricted affect Inability to articulate (within capacity) existing feelings and thoughts about deceased and loss. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

62. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Indicators, Continued Fear of intimacy in relationships with others, starting or worsening after death, seeming to indicate fear of loss Pattern of self-destructive relationships starting or worsening after death, including compulsive care-giving and replacement relationships Self-defeating, self-destructive, or acting-out behavior starting or worsening after death Chronic feelings of numbness, alienation, depersonalization, or other feelings/affects that isolate mourner from others Chronic anger, irritability, or combination of anger and depression Mental Illness/Developmental Disabilities Coordinating Center of Excellence

63. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Considerations for individuals with DD If you suspect an individual may be suffering from complicated bereavement, consider these possible factors first Difficulty with emotional expression or lack of outlets and support for expressed emotion Developmental age and understanding of death vs. “denial” Reliance on caregivers vs. “compulsive care-giving and replacement relationships” Co-occurring OCD or OCD features Mental Illness/Developmental Disabilities Coordinating Center of Excellence

64. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Feelings of isolation due to actual isolating circumstances Difficulty articulating abstractions such as “depersonalization” Co-occurring mood disorders undiagnosed or exacerbated by loss Collateral or “everyday” losses that are unacknowledged Mental Illness/Developmental Disabilities Coordinating Center of Excellence

65. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Taking these considerations into account, it may be appropriate to arrange a referral for expert grief counseling if indicators of complicated bereavement are present. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

66. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities What’s not Complicated Bereavement? These experiences can be misconstrued as CB, but in fact are common elements of uncomplicated (“normal”) grieving ( Rando, 1994): Recurrence of feelings, issues and unresolved conflicts from past losses that were not dealt with previously Feelings other than sadness (anger, guilt), and reacting to the loss behaviorally, socially and physically-not just emotionally Feeling that part of oneself has died with the deceased Mental Illness/Developmental Disabilities Coordinating Center of Excellence

67. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Feeling “sorry for oneself” Having a continued relationship with the deceased Maintaining parts of one’s environment to stimulate memories of the deceased Feeling more vulnerable about one’s own death or deaths of loved ones Mental Illness/Developmental Disabilities Coordinating Center of Excellence

68. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Taking action so others will not forget the deceased Feeling reluctant to change things/have things changed that the deceased was part of or knew about Experiencing some aspects of mourning that may continue for many years if not forever, and/or mourning that does not decrease linearly over time (italics mine) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

69. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Feeling resentment that others are living while one’s loved one has died, or that others are not mourning. Experiencing temporary acute upswings of grief long after the loss Mental Illness/Developmental Disabilities Coordinating Center of Excellence

70. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities “Suppressed grief suffocates; it rages within the breast, and is forced to multiply its strength”. Ovid, Tristium, V, 1, 63. Remember: facilitating the experience and expression of grief can make a profound impact on the lives of people we serve and support. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

71. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Citations American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 1994. Bowers, Duane, LPC “Trauma, PTSD and Traumatic Grief”, presentation, 2010 Caldwell, Gail. New York Times Book Review, April 15 2011 Dodd et al. A study of complicated grief symptoms in people with intellectual disabilities. Jrl of ID Res, May 2008, Vol 52 Part 5, p 415-425. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

72. ODODDODMHODDC Coordinating Center of Excellence for Mental Illness and Developmental Disabilities Gentile,Julie, MD. “Use of Biopsychosocial formulation in evaluation of grief and loss”, presentation, 2010 Groves, Richard and Klauser, Henriette Anne, The American Book of Dying, Ten Speed Press, 2005 Rando, Therese, PhD, Treatment of Complicated Mourning, Research Press, 1993 Smith, Douglas, Caregiving, Wiley Publishing, 1997 Sobsey, D. Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Baltimore: Paul H. Brookes Publishing Co,1994. Mental Illness/Developmental Disabilities Coordinating Center of Excellence