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Grief and Loss in Individuals with Dual Diagnosis: A Guide for MH and DD Professionals. Lara Palay, MSW, LISW-S.

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Grief and loss in individuals with dual diagnosis a guide for mh and dd professionals

Grief and Loss in Individuals with Dual Diagnosis:A Guide for MH and DD Professionals

Lara Palay, MSW, LISW-S


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.

Acknowledgments

Mental Illness/Developmental Disabilities Coordinating Center of Excellence


“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


DSM IV-R criteria (“mental retardation” no longer current language)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

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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


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


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


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


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


What does this mean? healing rituals to deal with grief? Not often.

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

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And finally… healing rituals to deal with grief? Not often.

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.

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Rando’s Six Tasks of Grieving healing rituals to deal with grief? Not often.

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Recognize healing rituals to deal with grief? Not often.(avoidance phase)

Recognize the loss

acknowledge the loss

understand that it has happened

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React, Recollect and Relinquish (confrontation phase) healing rituals to deal with grief? Not often.

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

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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


Readjust and Reinvest (accommodation phase) phase) con’t.

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

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How might these tasks present challenge for individuals with dual diagnoses?

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Recognition with dual diagnoses?

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)

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Reaction with dual diagnoses?

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.

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Relinquishing with dual diagnoses?

This may be difficult depending on the individual’s developmental stage or understanding of object permanence.

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Readjustment with dual diagnoses?

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.

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Reinvestment with dual diagnoses?

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.

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How can mental health and DD professionals support grieving individuals with dual diagnoses?

Suggestions for each task of grieving

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What needs to be in place? individuals with dual diagnoses?

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


Recognition individuals with dual diagnoses?

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.)

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Reacting individuals with dual diagnoses?

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…


Recollecting and Re-Experiencing individuals with dual diagnoses?

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.)

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Relinquishing individuals with dual diagnoses?

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”.)

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Reinvestment individuals with dual diagnoses?

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

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Remember that losses can come in individuals with dual diagnoses?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

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What are the rights of the people you work with smith 1997

To be in control individuals with dual diagnoses?

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


To be in control individuals with dual diagnoses?

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


To have a sense of purpose individuals with dual diagnoses?

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


To reminisce individuals with dual diagnoses?

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


To be in denial individuals with dual diagnoses?

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.

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To know the truth individuals with dual diagnoses?

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.)

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(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


To be comfortable 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.

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


To touch and be touched 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.

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


To laughter 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.

Yes!

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To cry and to express anger 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.

“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.

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(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.

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To explore the spiritual 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.

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.

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** 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.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

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To have a sense of family 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.

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


Additional Issues 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


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.

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Four basic issues in trauma and grief adapted from duane bowers lpc 2010

Who am I without…(my loved one)? Who am I not? 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”).

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?

Four Basic Issues in Trauma and Grief(adapted from Duane Bowers, LPC; 2010)

Mental Illness/Developmental Disabilities Coordinating Center of Excellence


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


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.

Trauma-Informed Care: A Universal Precaution

Mental Illness/Developmental Disabilities Coordinating Center of Excellence


For someone with traumatic stress, a 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.

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


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.

Complicated Bereavement: Some Considerations

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Categories of Complicated Bereavement 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.(Rando, 1994)

Absent Mourning

Delayed Mourning

Inhibited Mourning

Distorted Mourning (angry type; guilty type)

Conflicted Mourning

Unanticipated Mourning

Chronic Mourning

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Absent mourning

Absent mourning requires complete shock or complete denial 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.

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

Absent Mourning

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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

Delayed Mourning

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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

Inhibited Mourning

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Distorted mourning

Over-activity without sense of loss uncomplicated mourning as well

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)

Distorted Mourning

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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)

Conflicted Mourning

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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.

Unanticipated Mourning

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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

Indicators of Complicated Bereavement

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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.

Indicators, Continued

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Indicators continued1

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

Indicators, Continued

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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

Considerations for individuals with DD

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Feelings of isolation due to actual isolating circumstances complicated bereavement, consider these possible factors

Difficulty articulating abstractions such as “depersonalization”

Co-occurring mood disorders undiagnosed or exacerbated by loss

Collateral or “everyday” losses that are unacknowledged

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Taking these considerations into account, it may be appropriate to arrange a referral for expert grief counseling if indicators of complicated bereavement are present.

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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

What’s not Complicated Bereavement?

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Feeling “sorry for oneself” common elements of uncomplicated (“normal”) grieving (

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

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Taking action so others will not forget the deceased common elements of uncomplicated (“normal”) grieving (

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)

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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

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“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.

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Citations

American Psychiatric Association, and is forced to multiply its strength”. 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.

Citations

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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.

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