2. Traumatic Brain Injury: Challenging Behavior Anastasia Edmonston MS CRC TBI Projects Director Maryland Traumatic Brain Injury Project MD Mental Hygiene Administration

3. What We will Cover Today Brain Anatomy-form and function Brain Injury-how many & who is affected Types of Brain Injury

4. What We will Cover Today The Physical, Cognitive and Emotional/Behavioral Aftermath of Brain Injury TBI Screening Tool Brain Injury and Co-occurring disorders

5. What We will Cover Today Strategies for Supporting Individuals with Brain Injuries Resources Available Statewide, Regionally and Nationally

6. Skull Anatomy The skull is a rounded layer of bone designed to protect the brain from penetrating injuries. The base of the skull is rough, with many bony protuberances. These ridges can result in injury to the temporal and frontal lobes of the brain during rapid acceleration.injury to the temporal and frontal lobes Bony ridges

7. Skull Anatomy Injury to frontal lobe from contact with the skull

8. Lobes of the Cerebrum Frontal lobe Parietal lobe Occipital lobe Temporal Lobe Limbic Lobe

9. The Frontal Lobe The frontal lobe is the area of the brain responsible for our “executive skills” - higher cognitive functions. These include: Problem solving Spontaneity Memory Language Motivation Judgment Impulse control Social and sexual behavior.

10. Frontal Lobe Injury The frontal lobe of the brain can be injured from direct impact on the front of the head.frontal lobe During impact, the brain tissue is accelerated forward into the bony skull. This can cause bruising of the brain tissue and tearing of blood vessels. Frontal lobe injuries can cause changes in personality, as well as many different kinds of disturbances in cognition and memory.

11. Prefrontal Cortex The prefrontal cortex is involved with intellect, complex learning, and personality. Injuries to the frontal lobe can cause mental and personality changes.frontal lobe

12. The Developing Brain Children’s brains do not reach their adult weight of 3 pounds until they are 12 years old The brain, and most importantly, the brain’s frontal lobe region does not reach it’s full cognitive maturity till individuals reach their mid twenties

13. The Developing Brain The Frontal Lobe houses our executive skills, these include; judgement, problem solving, mental flexibility, etc. The Frontal Lobe is very vulnerable to injury Damage to the Frontal Lobe any where along the developmental continuum can impact executive skill functioning

14. Temporal Lobe The temporal lobe plays a role in emotions, and is also responsible for smelling, tasting, perception, memory, understanding music, aggressiveness, and sexual behavior. The temporal lobe also contains the language area of the brain. language area

15. Temporal Lobe Injury The temporal lobe of the brain is vulnerable to injury from impacts of the front of the head.temporal lobe The temporal lobe lies upon the bony ridges of the inside of the skull, and rapid acceleration can cause the brain tissue to smash into the bone, causing tissue damage or bleeding.bony ridges

16. Parietal Lobe The parietal lobe plays a role in our sensations of touch, smell, and taste. It also processes sensory and spatial awareness, and is a key component in eye- hand co-ordination and arm movement. The parietal lobe also contains a specialized area called Wernicke’s area that is responsible for matching written words with the sound of spoken speech.speech

17. Side Impact Injuries May Impact the Parietal Lobe Injuries to the right or left side of the brain can occur from injuries to the side of the head. Injuries to this part of the brain can result in language or speech difficulties, and sensory or motor problems.

18. Occipital Lobe The occipital lobe is at the rear of the brain and controls vision and recognition. vision

19. Occipital Lobe Damage Occipital lobeOccipital lobe injuries occur from blows to the back of the head. This can cause bruising of the brain tissue and tearing of blood vessels. These injuries can result in vision problems or even blindness.

20. The Limbic System The limbic system is the area of the brain that regulates emotion and memory. It directly connects the lower and higher brain functions.

21. Coup-Contra Coup Injury A French phrase that describes bruises that occur at two sites in the brain. When the head is struck, the impact causes the brain to bump the opposite side of the skull. Damage occurs at the area of impact and on the opposite side of the brain.

22. Diffuse Axonal Injury Brain injury does not require a direct head impact. During rapid acceleration of the head, some parts of the brain can move separately from other parts. This type of motion creates shear forces that can destroy axons necessary for brain functioning. These shear forces can stretch the nerve bundles of the brain. nerve bundles

23. Diffuse Axon Injury is a very serious injury, as it directly impacts the major pathways of the brain.

24. The Neuron Dendrites: Collects information from other neurons Cell Body Axon: Transmits information to other neurons.

25. Definitions Traumatic Brain Injury is an insult to the brain caused by an external physical force Diffuse Axonal Injury the tearing and shearing of microscopic brain cells Acquired Brain Injury is an insult to the brain that has occurred after birth, for example; TBI, stroke, near suffocation, infections in the brain, anoxia

26. Incidence of TBI CDC 2004 In the United States, at least 1.4 million sustain a TBI each year (That we know about)

27. What are the Costs of TBI? CDC 2006 Direct medical costs and indirect costs such as lost productivity of TBI totaled an estimated 60 billion in the United States in 2000. (That is equal to the cost of building the international space center or 60 times the net worth of Oprah Winfrey )Jean Langlois of the CDC

28. About 3.17 Million American civilians (more than 1.1% of population, live with the consequences of traumatic brain injury CDC in Journal of Head Trauma Rehabilitation 2008 (Vol. 23, No. 6, pp 394-400)

29. What Might it Feel Like Handwriting & Processing Exercise

30. Incidence of TBI CDC 2004 Of those 1.4 million.. 51,000 die; 290,000 are hospitalized; and 1,224,000 million are treated an released from an emergency department

31. “Reframed, the numbers nauseate. In America alone, so many people become permanently disabled from a brain injury that each decade they could fill a city the size of Detroit……...

32. …. Seven of these cities are filled already. A third of their citizens are under fourteen years of age.” …. Seven of these cities are filled already. A third of their citizens are under fourteen years of age.” From Head Cases, Stories of Brain Injury and its Aftermath Michael Paul Mason 2008 published by Farrar, Straus and Giroux

33. Brain Injury and Children According to the BIAA, Brain Injury is the leading cause of death and disability among children Approximately 470,000 TBI’s occur among children 0-14 years old a year Brain injuries account for over 90% of emergency department visits in children 0-14 years old CDC Report “Traumatic Brain injury in the United States January 2006

34. Brain Injury and Concussion in Children In sports alone, 300,000 + concussions are “estimated” to occur annually For every 1 concussion in the NFL, there are 5,650 youth injuries Sports associated with concussion: soccer, football, lacrosse, hockey, horseback riding, cheerleading…….. Gerard Gioia, Ph.D., Children’s National Medical Center in remarks at the BIAMD conference 2005

35. Other potential Neurotoxins that may impact the brain Exposure to lead paint Regarding exposure to alcohol in utero, according to Dr. Jacobson of Wayne State University “We found more serious cognitive impairment in relation to alcohol than cocaine or other drugs, including marijuana and smoking” From “Fetal Brains Suffer Badly From Effects of Alcohol” NYT 11.4.03

36. To Underscore The Developing Brain Children’s brains do not reach their adult weight of 3 pounds until they are 12 years old The brain, and most importantly, the brain’s frontal lobe region does not reach it’s full cognitive maturity till individuals reach their mid twenties

37. This is important to keep in mind because….. The Adult Consumer you are serving in your program may have suffered a brain injury as a child

38. Causes of TBI CDC 2006

39. Who is at the Highest Risk of TBI? 2005 Males 1.5 times as likely as females to sustain a TBI Two age groups most at risk are 0-4 year olds and 15-19 year olds The elderly, 75 and older from falls African Americans have the highest death rate from TBI

40. What about those with unidentified TBI? Adapted from MCHB webcast, Wayne Gordan, Ph.D 5.21.08 425,000 people treated by MDs in office visits Langlois 2004 90,000 treated in other types of outpatient settings Langlois, 2004 Uncounted injuries on the playground, on the playing fields, from falls in the home, assaults, domestic violence, returning veterans, etc. etc. etc…...

41. The Scope of the Problem Distribution of Severity: –Mild injuries = 80% (LOC < 30 min, PTA,1 hour) –Moderate = 10 - 13% (LOC 30 min-24 hours, PTA 1-24 hours) –Severe = 7 - 10% ( LOC >24 hours, PTA >24 hours)

42. The Importance of Post Traumatic Amnesia PTA is the period of time after injury when a person is unable to lay down new memories…for example

43. “That first morning, wow, I didn’t want to move, I was thankful that nothing’s broken, but my brain was all scrambled” Ryan Church, NYT 3/10/08 “All he remembers from the collision with Anderson is the aftermath, being helped off the field by two people, although he said he did not know who they were until he saw a photograph later” Ben Shpigel NYT reporter

44. The Faces of Brain Injury A short video by the Brain Injury Association of Florida

45. Possible Changes-Physical Motor skills/Balance Hearing Vision Spasticity/Tremors Speech Fatigue/Weakness Seizures Taste/Smell

46. Possible Changes-Thinking Memory Attention Concentration Processing Aphasia/receptive and expressive language Executive skills Problem solving Organization Self-Perception Perception Inflexibility Persistence

47. Possible Changes-Personality and Behavioral Depression Social skills problems Mood swings Problems with emotional control Inappropriate behavior Inability to inhibit remarks Inability to recognize social cues

48. Personality and Behavioral cont.. Problems with initiation Reduced self-esteem Difficulty relating to others Difficulty maintaining relationships Difficulty forming new relationships Stress/anxiety/frustration and reduced frustration tolerance

49. A memory deficit might look like trouble remembering or it might look like…… (Capuco & Freeman-Woolpert) She frequently misses appointments- avoidance, irresponsibility (for example...) He says he’ll do something but doesn’t get around to it (for example...) She talks about the same thing or asks the same question over and over-annoying perservation He invents plausible sounding answers so you won’t know he doesn’t remember (for example…)

50. An attention deficit might look like trouble paying attention or it might look like … (Capuco & Freeman-Woolpert) He keeps changing the subject She doesn’t complete tasks He has a million things going on and none of them ever gets completed (for example…) When she tries to do two things at once she gets confused and upset

51. A deficit in executive skills might look like the inability to plan and organize or it might look like... (Capuco & Freeman-Woolpert) Uncooperativeness, stubbornness Lack of follow through Laziness Irresponsibility

52. Unawareness might look like… (Capuco & Freeman-Woolpert) Insensitivity, rudeness Overconfidence Seems unconcerned about the extent of her problems Doesn’t think she needs supports Covering up problems (“everything’s fine…”) Big difference in what he thinks and what everyone else thinks about his behavior Blaming others for problems, making excuses

53. Lack of Awareness A common and difficult to remediate hallmark of a brain injury

54. Levels of Awareness Crossen et.al (1989) J Head Trauma Rehabilitation Intellectual Awareness-individual is able to understand at some level, that a particular function or functions is impaired. A greater level of intellectual awareness is required to recognize some common thread in the activities in which they have difficulty Emergent Awareness-individual is able to recognize a problem when it is actually happening. To do so, they must recognize a problem exists (intellectual awareness), and realize when it occurs Anticipatory Awareness-individual is able to anticipate a problem will occur and plan for the use of a particular strategy or compensation that will reduce the chances that a problem will occur, e.g. keep and refer to a calendar to support memory for daily schedule

55. The Relationship Between Brain Injury and Mental Health

56. Depression Depression is the most common Axis I psychiatric disorder after TBI followed by alcohol abuse, panic disorder, specific phobia and psychotic disorders (Gordon et. al 2004) A 50 yr.. Follow-up of 1,198 WWII vets found that 520 had incurred a TBI. 18.5% of vets with brain injuries had a life time prevalence of major depression verses 13.4% rate of depression among on brain injured vets (Holsinger et.al 2002)

57. The Post -Concussive Syndrome and PTSD Dr. Paul McClelland Increased startle response; especially to loud sounds Irritability Avoidance of many social events Intolerance of new situations

58. Organic Personality Disorder & Anti-Social or Hysterical Personality Traits Dr. Paul McClelland Decreased impulse control Labile and superficial affect Impaired insight and self awareness Decreased empathy and social awareness Impaired initiative (Depression?)

59. Partial Seizures & Panic Attacks or Dissociative States Dr. Paul McClelland Most common type of post-traumatic epilepsy Temporal lobe damage and complex partial seizures “Spells” starting suddenly & lasting a few minutes Olfactory (smell) or gustatory (taste) hallucinations Déjà vu or jamais vu Micropsia, macropsia and other symptoms

60. Obsessive-Compulsive Traits after TBI: Pre- Existing Conditions or Adaptation to Cognitive Deficits & Other Changes? Dr. Paul McClelland Compulsive behaviors as adaptations for memory loss Temper tantrums and other adaptations Non-pharmacological management of brain-injured patients

61. Other Mental Health Disorders Related to TBI PTSD is noted in some individuals following TBI even if there is no memory of the incidence (Klein, Caspi 2003) Rapid cycling bipolar is rare but noted in the literature for individuals with temporal lobe damage (Murai, Fujimoto 2003) Psychotic syndromes occur more frequently in individuals who have had a TBI then in the general population ( McAllister, Ferrell 2002 )

62. TBI & Suicide “The risk of attempted or completed suicide in neurological illness is strongly related to depression, feelings of hopelessness or helplessness, and social isolation” (Arciniegas & Anderson, 2002) Simpson and Tate (2002) screened 172 individuals for suicidal ideation and hopelessness. Findings using the Beck Suicide Ideation and Hopelessness Scales found 35%felt hopeless and 23%expressed suicide ideation. 18% had attempted suicide post injury

63. Individuals with or without a history of brain injury often share identical risk factors for suicide Teasdale & Engberg 2001 Young Adults Males Substance Abuse Other psychosocial disadvantages

64. Teasdale & Engberg’s population study of 145,440 Danes post TBI: Followed individuals with concussion, skull fractures and cerebral contusions or traumatic intracranial hemorrhages (lesions) for 15 years Incidence of suicide among all three groups higher compared to general population Presence of a co-occurring substance abuse diagnosis increased suicide rates among all three groups Significantly greater risk for suicide found among those with lesions than those with concussion or fracture Rate of suicide was 1% over a 15 year period

65. Subsequent Studies….. Simpson & Tate A 2003 study found of 172 individuals post TBI, 17%attempted suicide over a period of 5 years A 2005 study of 172 individuals with a hx of brain injury found that those with comorbid post injury history of psychiatric/emotional disturbance and substance abuse were 21 times more likely to attempt suicide post injury

66. Why Screen? What other TBI Screening efforts have found

67. 2000 Epidemiological Study of Mild TBI J. Silver of NYU, cited in WSJ by Thomas Burton 1.29.08 http://online.wsj.com/article/SB120156672297223803.html?mod=googlenews_ 5,000 interviewed 7.2% recalled a blow to the head w/unconsciousness or period of confusion Follow up testing found; 2x rate of depression, drug and alcohol abuse Elevated rates of panic and and obsessive-compulsive DO

68. Brain Injury in the Correctional Setting-Nationally CDC website 2008 According to jail and prison studies,25- 87% of inmates report having experienced a TBI-this compared with 8.5% of the general population Prisoners with a history of TBI may also experience mental health disorders (including; severe depression, anxiety, substance abuse)

69. Brain Injury in the Correctional Setting-Nationally CDC website 2008 Woman inmates who are convicted of a violent crime are more likely to have sustained a pre-crime TBI or some other form of physical abuse Women with substance abuse disorders have an increased risk for TBI compared with women in the general population

70. In Maryland- Screening Results from the MD TBI Post Demo II Project-2005 –Summary of TBI Incidence Among all Screened at 7 public mental health agencies in Frederick and Anne Arundel counties –N=190 –39% no reported history of TBI (78) –58.94% of individuals with a history of TBI (112) –35.78% of individuals with a history of a single incidence of TBI (68) –23% of individuals with a history of 2 or more TBIs (44)

71. Details-County Detention Center 2005 –N=41 –Single TBI= 16 –2 or more incidents of TBI= 14 –No history of TBI= 11 –73% screened reported a history of TBI

72. County Detention Center 2008 –N=25 (16 male, 9 female) –22 reported possible TBI(s) –Single TBI=10 –2 or more incidents of TBI= 12 –No History of TBI =3 –88% screened reported a history of TBI

73. TBI in a County Jail Population Slaughter et. al Brain Injury 2003 69 randomly selected inmates 60 (87%) reported TBI over their lifetime 25 (36%) reported TBI in the prior year Later group had worse anger and aggression scores, trend towards poorer cognitive test results and higher prevalence of psychiatric DO then those w/out TBI in prior year

74. Brain Injury in the Correctional Setting-Nationally CDC website 2008 According to jail and prison studies,25- 87% of inmates report having experienced a TBI-this compared with 8.5% of the general population Prisoners with a history of TBI may also experience mental health disorders (including; severe depression, anxiety, substance abuse)

75. Brain Injury in the Correctional Setting-Nationally CDC website 2008 Woman inmates who are convicted of a violent crime are more likely to have sustained a pre-crime TBI or some other form of physical abuse Women with substance abuse disorders have an increased risk for TBI compared with women in the general population

76. Brain Injury & Violence Domestic Violence Greater than 90% of all injuries secondary to domestic violence occur to the head, neck or face region (Monahan & O’Leary 1999) Adapted from The Alabama Department of Rehabilitation Services DV Training Corrigan et.al., (2003) found that of 167 individuals treated for domestic violence related health issues, 30% experienced a loss of consciousness on at least one occasion, 67% reported residual problems that were potentially TBI related Valera and Berenbaum, (2003) assessed 99 battered women. Of these, 57 had brain injured related symptomatology

77. Homelessness & Brain Injury A little studied population, however….. A University of Miami study found that 80% of 60 homeless individuals had high incidence of neuropsychological impairment Researchers in Milwaukee found possible cognitive impairment in 80% of 90 homeless men evaluated. Dr. LaVecchia of the MA Statewide Head Injury Program reported in 2006 that of 140 homeless individuals evaluated, 83.6% of males and 16.4% of females had an acquired brain injury Other studies in the UK and Australia show similar rates of brain injury among homeless individuals

78. Correlation between TBI & Homelessness Hwang et.al 10.7.08 Canadian Medical Journal 904 homeless individuals surveyed Lifetime Prevalence of TBI-53%, more common among men than women surveyed Rates 5 or more times greater than the 8.5% lifetime prevalence in general population and consistent w/ prison studies

79. TBI & Homelessness “For Veterans, A Weekend Pass From Homelessness” from the New York Times 7.26.09, Erick Eckholm Human service professionals will be seeing increasing numbers of returning service members in need of services over the next few years

80. “….The ranks include young men like Kenneth Kunce, 26, who suffered a traumatic brain injury when his Humvee was hit by a roadside bomb in Iraq. The injury left him disorientated, jumpy and temperamental. When he came home he started using Ecstasy and alcohol, he said he lost his wife and more than one job. He said he was grateful to the Veterans Affairs hospital for providing speech and physical therapy, but added that he still had trouble coping with noises and anger. Mr. Kunce, who sometimes lost his train of thought as he spoke to this reporter, is living out of his car.”

81. The HELPS Brain Injury Screening Tool (see handout) The original HELPS tool developed by M. Picard, D. Scarisbrick, R. Paluck, 9.1991 Updated by the Michigan Department of Community Health

82. H ELPS Have you ever Hit your Head or been Hit on the Head? Prompt individual to think about; TBI at any age, MVAs. Assaults, Sports injuries, Service related injuries, Shaken baby and/or adult

83. H E LPS Were you ever seen in the Emergency room, hospital, or by a doctor because of an injury to your head? Explore the possibility of “unidentified traumatic brain injury” many do not present in medical settings

84. HE L PS Did you ever Lose consciousness or experience a period of being dazed and confused because of an injury to your head? Remember, a LOC isn’t required for someone to develop symptoms subsequent to a blow to the head. “alteration of consciousness” AKA post traumatic amnesia (PTA). At this point, the interviewer may consider asking the individual if they have had multiple mild TBI

85. HEL P S Do you experience any of these Problems in your daily life since you hit your head? You want to know when any problems began (or began to be noticed) Remember, lack of awareness is a hallmark of brain injury, you might ask if anyone close to the individual has made any observations regarding changes in function.

86. HEL P S Headaches Dizziness Anxiety Depression Difficulty concentrating Difficulty remembering Difficulty reading, writing, calculating Poor problem solving Difficulty performing your job/school work poor judgement (being fired from job, arrests, fights, relationships affected)

87. HELP S Any significant Sickness? Acquired Brain Injury (ABI) can result in many of the same functional impairments as traumatic brain injury (TBI). For example, brain tumor, meningitis, West Nile virus, stroke, seizures, toxic shock syndrome, aneurysm, AV malformation, any history of anoxic injury, e.g. heart attack, near drowning, carbon monoxide poisoning can all result in multiple deficits

88. Scoring the HELPS Positive for a possible Brain Injury when the following three are identified: An event the could have caused a brain injury (YES to H, E, or S), and A period of loss of consciousness or altered consciousness after the injury or another indication that the injury was severe (YES to L or E), and the presence of 2 or more chronic problems listed under P that were not present before the injury.

89. Scoring the HELPS A positive screening is not sufficient to diagnose TBI as the reason for current symptoms and difficulties-other possible possible reasons need to be ruled out Some individuals could present exceptions to the screening results, such as people who do have TBI- related problems but answered “no” to some questions Consider positive responses within the context of the person’s self-report and documentation of altered behavioral and/or cognitive functioning

90. Additional comments and observations of the interviewer Any visible scars? Walks with a limp? Uses a cane or walker? Has a foot brace? Limited use of one hand? Appears to have difficulty focusing vision? Difficulty answering questions? Answers are unorganized and/or rambling Becomes easily distracted, agitated or is emotionally labile

91. What you are looking for…..And Why Any reported or suspected functional difficulties that are interfering with home, work or community activities With the identification a history of brain injury, professionals can better support the individuals served and make informed referrals to brain injury specialists when appropriate

92. Remember, for most, Brain Injury is: -A loss of Self -A loss of future -loss of possibilities

93. “I had a job, I had a girl, I had something going mister in this world…………” A 10 year survivor of a TBI quoting a Bruce Springsteen song when describing what he had lost because of his injury

94. A compromised brain can lead to compromised behavior, further adding to social isolation and social failure The following slides 3 are adapted from Webcast: sponsored by the Health Resources and Services Administration’s Federal TBI Program Web cast July 27, 2006

95. Speakers: Harvey E. Jacobs, Ph.D., Licensed Clinical Psychologist/Behavioral Anaylist Marty McMorrow, Director of National Business Dev., The MENTOR Network Jane Hudson, JD., senior Staff Attorney, National Disability Rights Network

96. Behavioral Statistics Approximately 90% of all people who experience severe disability following brain injury experience some emotional or psychiatric distress 40% continue to demonstrate behavioral difficulty five years post injury

97. Behavioral Statistics 25% experience behavior dysfunction that interferes with other activities of daily life 3%-10% experience severe behavioral dysfunction that may require intensive professional and residential intervention (~3,000-9,000 new people per year)

98. Research findings regarding Behavior Problems after TBI “Aggressive behavior is associated with presence of major depression, frontal lobe lesions, poor premorbid social functioning and a history of alcohol and substance abuse” Tateno et.al J of Neuropsychiatry Clin. Neuroscience 2003

99. Research findings regarding Behavior Problems after TBI Research conducted by Wood and Liossi in 2006 reports “it is tentatively suggested that significant impairment in verbal memory and visuospatial abilities against a background of diminished executive-attention functioning is associated with the development of aggression after brain injury,especially when other risk factor such as low premorbid IQ, low socioeconomic status, and male gender are present” J of Neuropsychiatry Clin. Neuroscience

100. Research findings regarding Behavior Problems after TBI “Impairments in recognizing the emotional state of others may underlie some of the problems in social relationships that these patients experience……TBI patients were found to be impaired on emotional recognition compared to the control patients both early after injury and one year later” Ietswaart et. al. Neuropsychologia, 2007

101. According to McMorrow, Jacobs and Hudson; HRSA Webcast July 27, 2006 “Almost all people who experience disability following brain injury are not inherently aggressive or assaultive. However, for some people, when challenges are not properly addressed this can result in…”

102. -Lack of responsiveness to requests -Property destruction -Verbal or physical aggression -Violation of personal or sexual boundaries -Wandering or flight -Self harm/self abuse/suicide

103. “Neurobehavioral Challenges” According to McMorrow, Jacobs and Hudson are caused by: Pre-injury history Post-Injury learning and experiences Inability to negotiate “difficult” situations Others’ not recognizing the basic challenges to an individual with TBI, and Not providing proper treatment

104. With the Proper Supports: -A renewed sense of self -A future can be imagined -New possibilities can be created

105. Strategies

106. Attention is the ability to stay focused on a specific topic or task. It is critical to successful participation in purposeful activity. The next 10 slides are from the Rhode Island BIA presentation “Brain Injury: A Practical Training for Caregivers”

107. Attention  Gain and encourage eye contact when appropriate.  Use an opening statement such as “Are you ready to get started” to gain the consumer’s attention before explaining an activity or giving directions.  Be specific and clear. Avoid lengthy or vague explanations.  Slow down when you speak. It is very difficult to listen carefully to someone who is talking at a fast pace.  Limit interruptions when possible.

108. Attention  Minimize environmental distractions (competitive background noise, cluttered work areas and cluttered walls).  Present information in an organized fashion.  Pause to allow the consumer to process or to finish taking notes before moving to the next direction or to a new piece of information.

109. Attention  Encourage a steady work pace. Rushing can result in an increase in mistakes or in skipping an important step in an activity.  Breakdown assignments into smaller more manageable portions.  Provide a task breakdown or assist the consumer in developing a task breakdown for specific activities

110. Attention  Avoid overwhelming the consumer. Don’t plan on covering large amounts of information in a single session.  When assigning tasks that the consumer will be expected to complete independently, begin with simple activities. Progress to more difficult or complicated tasks if the consumer is successful with the simple activities.

111. Attention  If you notice that the consumer is beginning to lose focus, give a cue to redirect to task, or ask if they need a short break.  Provide positive feedback when the individual is performing well or requesting to use appropriate modifications or strategies during a session.  When finishing an instructional session, help the consumer to review the material that was covered. Place emphasis on any follow up activities the consumer is supposed to complete independently.

112. Attention To pay attention, we must be awake and alert, this is referred to as arousal level. Under normal circumstances our central nervous system automatically keeps the arousal level regulated. As a result of brain injury clients may experience lethargy or sluggishness referred to as a state of under arousal. Or they may appear to be ‘hyper’ or over stimulated known as a state of over arousal. In some cases the use of sensory stimulation, relaxation or focusing techniques can be helpful. Responses to sensory input can vary from person to person.

113. Attention  Use an appropriate volume and tone of voice for the individual consumer. A softer voice may be more tolerable to someone who is over stimulated. A louder voice with extra emphasis on key words may be helpful to someone who is under aroused.  Determine if the use of white noise or environmental sound machines is helpful.  Use high intensity white light or bright natural light for individuals who are under aroused, dimmed lighting for those who are over aroused.

114. Attention  Play background music that the individual finds helpful when paying attention to a particular activity, or for relaxation (soft soothing music, upbeat or rhythmic music).  Include breaks into the daily schedule to listen to short guided meditation or relaxation tapes.  Pause between activities or during lengthy activities to take a few deep breaths.

115. Attention  Movement such as gentle use of a rocking chair, or brisk movement can help to regulate arousal.  Joint and muscle stimulation experienced during weight bearing or resistive exercises can also assist with regulation of arousal.  Encourage participation in a regular exercise program or activity such as Yoga or Tai Chi when appropriate.

116. The Benefits of Exercise Post Injury TBI Consumer Report # 2 TBI Central MT. Sinai Model Program Those who exercise had fewer physical, emotional and cognitive complaints. E.g. sleep problems, irritability, forgetting and being disorganized Non-exercisers complained of more cognitive problems or symptoms than those who exercise Exercisers with TBI were less depressed Exercisers viewed themselves as healthier Exercisers were often engaged in school, work, and “got around” the community more freely Exercisers had more severe brain injuries than the non- exercisers, suggesting that a severe injury does not prevent engaging in exercise

117. Memory functions are complicated and sensitive. Memory is frequently the first function to be notably impaired and one of the last functions to be regained in the recovery process. The next 32 slides are adapted from the Rhode Island BIA presentation “Brain Injury: A Practical Training for Caregivers”

118. Memory Memory Systems can significantly improve client follow through and independence when used on a regular basis. When a new system is introduced a ‘repetitive training’ and cueing period is recommended to reinforce consistent use. Systems can be updated to accommodate for improvements in memory, or for changing needs.

119. Memory When designing a memory system:  Define the goals or exact needs the system will be meeting.  Designate separate sections based on specific needs.  Use a format and style that the individual prefers.  Encourage use of one system that is taken everywhere. (technology!) See Tony Gentry, Ph.D. OTR/L’s website: www.vcu.edu/partnership/pda/Jobcoach

120. Memory  Timers, wrist watch alarms or talking watches can provide prompts.  Use check off sheets (this allows the individual to self-monitor and reference back).  Post simple reminder signs for prompts to turn off appliances, lights, etc.  Label drawers and cupboard fronts indicating their contents.

121. Memory  Post step by step directions for appliances such as the coffee maker, microwave etc.  Post-it notes for extra reminders, for example place a post it note on the memory book as a reminder to check the ‘to do’ list if there is a critical item on the schedule the next day.  Provide written or picture based instructions in addition to verbal instructions.

122. Memory  Color code folders, storage containers, or calendar entries to help with recall and identification.  Use tape recorders to record meetings or appointments.  Provide repetitive training or instruction when reintroducing functional activities into the daily schedule, and with all activities that require new learning.  Encourage note taking at meetings, appointments, etc.

123. Memory  Pocket “Voice it” recorders can be used to record reminders throughout the day.  Use the home answering machine to leave “reminders to self”.  Have a back up plan. For instance, in addition to strategies for remembering keys, have a contingency plan with extra keys available at accessible locations (neighbors, friends, etc.)

124. Problem Solving Problem solving is used for completion of a wide range of activities throughout the day. Many activities are sequenced; performed by using a step by step approach. Cues can support consumer participation in activities Written or picture task breakdowns can be used during early training or as a prop for independent task completion as the consumer progresses. Strategies and approaches can also be developed to help consumers with higher level or abstract problem solving skills.

125. Problem Solving/Sequencing example Squat Pivot Transfer 1)Park- at an angle along the mat, left front of the wheelchair touching the mat. 2)Lock both wheels 3)Check your locks 4)Flip up left arm rest 4)Scoot your bottom forward 5)Feet flat on the floor 8 -10 inches apart, left foot forward 6)Hands- Left hand on the mat, Right hand on the chair arm 7)Push on arms, lift up bottom, pivot onto the mat

126. Problem Solving State Problem:_________________________ List 3 solutions: 1)_____________________ 2)_____________________ 3)_____________________ Solution 1 Solution 2 Solution 3 Pros Cons Pros Cons Pros Cons Describe the most logical and effective solution based on the above:________________________________ _____________________________________

127. Impulsivity Impulsivity is often a consequence of injury to the frontal lobes. Impulsivity can have a negative impact on independent living, particularly when life changing decisions are made without carefully thinking things through.

128. Impulsivity Change Plan What change do I want to make?____________________ Why do I want to make the change?_________________ Change Not Changing Pros Cons Pros Cons List step for change:1)________________2)______________ 3)________________4)________________5)___________ ___ Who could help me?_________________________________ What might interfere with my change?___________________ How would I evaluate success? _______________________

129. Initiation Poor initiation, a decreased ability to initiate or begin activities, can be a consequence of brain injury. Initiation deficits are often misinterpreted, caregivers may assume the consumer doesn’t care or that they aren’t motivated. Damage to any one of several different areas of the anterior part of the brain can result in deficits in this area.

130. Initiation  Many individuals respond well to structure and consistent routines.  When preparing daily and weekly schedules be specific. Designate specific times for activities to be performed. In addition to using a general concept such as clean-up the kitchen, indicate specific tasks for example: put dishes in the dishwasher, wipe off the table, wash the counter.  Begin with lighter demands that promote success. The difficulty of demands can be increased when the consumer demonstrates consistent follow through with the easier activities.

131. Initiation  Encourage consumer participation when developing schedules.  Provide training and cues when introducing a new or updated schedule.  Accept close approximations of the desired behavior when changes are initially instituted.  Use positive reinforcement for all successful follow through.  Engage the consumer in a problem solving approach when addressing areas of difficulty.

132. Communication Communication is very complex and involves processing of both verbal and nonverbal information. Individuals may have receptive deficits, difficulty understanding specific words or with the way in which words are presented. They may have expressive deficits, difficulty remembering a word, or with pronouncing words correctly when speaking

133. Communication  Receptive Deficits: Slow your rate of speech Simplify sentence structure, be clear and concise Pause between sentences or topics to allow for processing Repeat key words or concepts Rephrase as needed Summarize information frequently

134. Communication  Expressive Deficits:  Do not expect an immediate response to a question or statement. Pause to allow the individual time to prepare their response. Accept gestures and pantomime in addition to verbal speech. Ask yes/no questions, avoid questions that require lengthy or detailed answers. Provide extra time for consumers who are using augmentative communication devices. Accept written answers or drawings.

135. Hearing/Central Auditory Processing  When there is trauma to the temporal lobe area, individuals may experience a change in the ability to hear sound or in the ability to process auditory (sound) input. Once sound is detected by the ear, the brain processes what was heard on multiple levels. Individuals with central auditory processing deficits may have difficulty with:  Filtering out competitive background noise  Noticing the differences between similar sounds or words  Maintaining attention on a speaker who is giving a presentation on complicated information or when listening to a long presentation.  Remembering information as it is processed.

136. Hearing/Central Auditory Processing  Reduce or eliminate background noise.  Instruct the client to directly face the speaker to maximize on visual speech cues.  Increase the volume of the speaker’s voice in relation to the surrounding background noise at presentations or meetings. Provide a speaker microphone or assisted listening device.  Speakers should avoid covering their mouth, shouting or over-enunciating words.  Consider referring for an audiological evaluation to determine if hearing aides or specialized alerting devices would be beneficial.

137. Vision Vision is an extremely important source of sensory information. The eyes send many messages to the brain, the brain must interpret all of the incoming messages. There can be problems with coordinated movements of the eyes and/or with the brains ability to process and interpret information accurately. Deficits can range from mild to severe. Even subtle deficits can affect the individuals ability to work on visual tasks and should be addressed.

138. Vision  Use enlarged print.  Print on yellow instead of white paper or use a yellow acetate overlay on documents to increase contrast.  A book mark or ruler can be used to help with staying on the line when reading or scanning for information.  Change florescent lights to high intensity white lights, or increase natural light.  Simplify forms; determine if extra spacing, grid lines, bold print or bold lines are helpful.

139. Vision  Use a cut out guide to isolate sentences or words.  When consumers are working on near vision tasks for long periods, have them take short breaks to shift their gaze to distant objects to decrease eye fatigue.  Refer to a vision care professional trained in working with acquired brain injury for thorough assessment of vision related complaints.  Refer for adaptive technology assessment for computer modification or low vision technology when appropriate.

140. Activity Tolerance Fatigue is a common complaint after brain injury. It is more difficult for individuals with brain injury to compensate for their deficits when they are over tired. Consumers may need more sleep than they did before they were injured. They may not be able to tolerate a very busy schedule. It is important to consider energy conservation and work simplification when preparing daily and weekly schedules. In some cases they may have sleep disturbances; the physician should be consulted if a consumer is unable to get to sleep or stay asleep during the appropriate hours.

141. Activity Tolerance When developing a plan to manage fatigue:  Carefully review the current schedule with the consumer.  Make a list of the most important activities, those that must be done on a daily or weekly basis, and plug them into the new schedule (Some activities may need to be eliminated when revising a schedule).  Schedule activities that are more difficult or demanding throughout the week. Don’t schedule all heavy or difficult activities on a single day.

142. Activity Tolerance  Alternate between light or low demand activities and high demand more difficult activities on the daily schedule.  Determine if there are certain times during the day that the consumer is at his or her ‘best’ try to schedule important or priority activities at those times.  Determine what times of the day the consumer is usually more fatigued, schedule only light activities or rest periods during these times.

143. Activity Tolerance  Encourage consumers to increase their use of accommodations and strategies or provide extra supports during the times of day that they are usually more fatigued.  Avoid rushing, schedule enough time for each activity to be performed at a steady and reasonable pace.  Remember that cognitive activities can be very tiring for some consumers. You will need to observe how each individual responds to different activities.

144. Considerations for Plan Development  Each plan must be developed on a case by case basis to meet the individuals needs.  Always include the client in development of the plan when possible.  Each consumer may present with a wide variety of strengths and challenges.  Individuals may have deficits in multiple areas.  Because a consumer does do well in some areas does not mean they should automatically be expected to do well in all areas.

145. Considerations for Plan Development  Limitations in each deficit area may require specific accommodations.  Some deficits may not be obvious when your first meet the consumer.  Recovery can vary greatly from individual to individual. Consumers may need extra support to realize they can’t compare their recovery with that of other brain injury survivors.  Because recovery can continue for some time the plan may need to be changed and updated on a regular basis to meet the consumer’s changing needs.

146. Additional Considerations  It is important that consumer is motivated to work on the goals that have been developed.  Always consider the consumer’s input when developing goals.  If the team has developed goals that are different from the consumer’s, be sure to explain what the purpose and potential value of working on those goals might be. Discuss how the goals developed by the team may compliment or support the consumer’s personal short and long term goals.  Keep the discussion focused on identifying goals and activities that offer the opportunity for success.

147. Potential Disruptive Behaviors Not all brain injury survivors will experience difficulty with social behavior. However, TBI survivors who have had severe frontal lobe injury or who have been more recently injured may exhibit disruptive behaviors. You may observe: Social judgment errors Threatening comments Inappropriate sexual comments or advances

148. Potential Disruptive Behaviors In most cases these behaviors are not intentional but rather the result of poor inhibition and judgment. These behaviors, although upsetting are not usually meant to be harmful, and can be addressed by using a consistent team approach.

149. The next 10 slides are adapted from the New Hampshire Project Response presentation “Changes After Brain Injury”

150. Environmental Triggers for Behavioral Problems Too much stimulation Rapid pacing Lack of predictability and clear structure Overwhelming physical and cognitive demands Negative social input

151. Note: if you manage the environment, you can prevent many problems

152. Guidelines For Behavior Management Increase rest time. Fatigue is a common problem. People have limited coping skills. Reduce stress.

153. Guidelines For Behavior Management Keep the environment simple. People with brain injuries are easily overstimulated Decrease interruptions and distractions Be consistent Decrease surprises

154. Guidelines For Behavior Management Keep instructions simple, concrete. If the person has problems processing language, try gesturing or cueing. Write things down.

155. Guidelines For Behavior Management Give feedback and set goals Feedback should be direct, caring, nonjudgmental, but not subtle Avoid criticism Give supportive encouragement Have a positive attitude Use the “feedback” sandwich

156. Guidelines For Behavior Management Be calm, cool, and friendly during an incident This can reduce agitation Avoids reinforcing misbehavior Redirection works. When the person is upset, agitated, aggressive, focus attention on some other topic, task, person. Provide choices

157. Guidelines For Behavior Management Decrease chance of failure Keep success rate above 80% Watch for frustration Behavioral momentum Expect the unexpected. People with brain injuries can have great variability from day to day. Mood swings are common. People with TBI are sensitive to changes, disruptions in routine, lack of sleep, alcohol, minor illnesses, fatigue, other stressors.

158. KEEP IN MIND… Progress can be inconsistent and unpredictable What works today may not work tomorrow, but may work the following day –Reduced stamina and fatigue may persist –Impairment of memory may hinder new learning –Transitions may be especially difficult

159. Prevention, Prevention, Prevention Communicate expectations Recognize internal and environmental triggers, plan strategies Provide clear structure and predictable routines Maintain realistic expectations Help peers learn to alter interactions to avoid triggers

160. Additional Strategies From the MD TBI Project

161. Most Strategies address more than one cognitive and or behavioral deficit

162. Strategies Spontaneous restoration of functioning occurs most rapidly and dramatically in the first year following a brain injury. Generally speaking, the greater the time from the injury the more rehabilitation efforts will focus on compensation

163. Environmental & Internal Aides Creative cognitive strategies will employ both kinds of aids depending on individual need

164. Environmental, AKA Prosthetic external memory strategies and devices Changing or modifying the environment to support and/or compensate for a injury imposed deficit For Example: labeling kitchen cabinets

165. Internal The strategy is “in your head” For Example: “I have to work the memory muscle by counting everything, like how many times I pedal when I am on a bike” Actor George Clooney discussing the use of internal memory strategies in The London Sunday Times10. 23.05

166. Oftentimes a strategy can transition with practice from the external to the internal For Example: Preparing remarks on paper with “pauses” written in to slow down impulsive speech can eventually segue into a internal strategy, “At the end of every 2-3 sentences, I will take a breath and check in with my listener”

167. Strategies can help individuals compensate for the physical barriers imposed by a brain injury For Example: Prism glasses may be prescribed to address double vision after injury just as bifocals are prescribed for many after age 40

168. Strategies Use of a template for routine tasks, on the job, at home Use of a high lighter (RED) Use of ear plugs to increase attention, screen out distractions (Parente & Herman 1996) Partitions/cubicles, at work, quiet space at home Model tasks e.g. turning on a computer and accessing email

169. Strategies Use of pictures, for faces/names, basic information, for step-by-step procedures, e.g. making coffee Use of a timer, to track breaks at work, the time minimum technique, allocated time to puzzle over a problem or vent a frustration Books on tape, movies, keep the subtitles (for processing content in the case of memory and comprehension problems and increase awareness of nonverbal cues/communication)

170. Strategies Car Finder-low tech, install a longer radio antenna with a day-glow flag, high tech, Design Tech International by DAK Corp. Electronic pill boxes/blister packs with day of the week labels Review schedule each day Post signs on the wall etc. (use pictures/symbols for low literacy skills) Try to “routinize” the day as much as possible

171. Teach a variety of strategies for individuals to incorporate into their daily routines Michelle Rabinowitz OTR/L Safety checklist (e.g. for use of stove)reinforces attention Checklists- “things to do before leaving the house” (turn off all the appliances?, lock all the doors?, did I take my morning medications? turn down the heat/turn off the air conditioner?, do I have money or keys?, where am I going?, how will I get there? What time should I leave? Etc.) Very good for routine tasks, reinforces memory Place visual cues in the environment (cupboard labels, written directions, calendars, list of emergency phone numbers) reinforces memory

172. Memory Strategies Adapted from: Parente & Herman in Retraining Cognition 1996 Aspen Publishers

173. SOLVE Mnemonic “S” (S)pecify the problem “O” (O)options-what are they? “L” (L)isten to advice from others “V” (V)ary the solution “E” (E)valuate the effect of the solution, did it solve the problem?

174. Organizing the Environment Consistency, accessibility, separation, grouping, proximity Consistency-put things in the same place, keys, wallet etc. Accessibility-things that are commonly used, keep them physically close, in the kitchen, in the office Separation-put things in logically distinct locations. Clothes, mail Grouping-put things that are used together in the same area, raincoat & umbrella Proximity-cooking utensils near the stove

175. Setting GOALS Executive Skills Training G” (G)o over your goals every day-helps memory and awareness “O” (O)rder your goals-short and long term “A” (A)sk yourself two questions each day: “what did I do today to achieve my goals?” and “What could I have done differently to achieve my goals” “L” (L)ook at your goals each day. Post goals and progress on the wall, refrigerator etc.

176. Listening Skills “L” (L)ook at the person-focus on nonverbal aspects of communication “I” (I)nterest yourself in the conversation- use “social fillers” e.g “I see”, “Tell me more” “S”(S)peak less than half the time- decrease the chance of getting off topic

177. Listening Skills continued “T” (T)ry not to interrupt or change the topic-stick to the topic at hand “E” (E)valuate what is being said. Question the content, do not blindly accept what is being said “N” (N)otice body language and facial expression-train this skill via use of pictures or scenes from movies, TV

178. Try these techniques in groups or as focus of individual sessions. During groups utilize a peer feedback component

179. More Thoughts on Listening Skills An area where reduced cognitive skills can be misinterpreted as poor interpersonal skills No one likes a “noisy listener” Poor listening skills can be impacted by anxiety (about memory, social skills etc.) Relaxation techniques can be helpful (breath in slowly over 7 breaths, hold for 4-7 counts, exhale over 7, repeat as necessary)

180. Strategies for Injury Imposed Barriers Watch this scene from the 2007 Movie The Lookout What are the character’s barriers? What are the strategies he is using to compensate?

181. Brain Injury the Long Term Consequences Follow the injury and recovery of Iraq veteran, “Toggle”, a character in the Doonesbury comic strip. Gary Trudeau accurately depicts blast injury, living with motor, visual, and speech and language deficits (especially aphasia) and PTSD as Toggle picks up his life post injury. http://www.doonesbury.com/strip/dailydose/ http://www.doonesbury.com/strip/dailydose/

182. References Slides 3-21 adapted from Dr. Mary Pepping of the University of Idaho’s presentation The Human Brain: Anatomy,Functions, and Injury Corrigan JD. (1995). Substance Abuse as a Mediating Factor in Outcome from Traumatic Brain Injury. Archives of Physical Medicine and Rehabilitation Vol. 76, April: 302-309 Bombardier, CH., Temkin, NR., Machamer, J., Dikmen SS.(2003), The Natural History of Drinking and Alcohol-Related Problems After Traumatic Brain Injury Archives of Physical Medicine and Rehabilitation Feb;84(2):185-91. Bombardier C., Davis, C. (2001). Screening for Alcohol Problems Among Persons with TBI. Brain Injury Source. Fall 16- 19. Corrigan J., et. al (1998) Utilities for Community Professionals. Ohio Valley Center for Brain Injury Prevention and Rehabilitation

183. Resource Coordination in Maryland Charlotte Wisner, Resource Coordinator for Frederick & Washington Counties, call 301-682-6017 Lauren Dorsey, Resource Coordinator for Baltimore & Howard Counties, call 301-529-1508 Catherine Reinhart Mello, Resource Coordinator for Montgomery County, call 301-586-0900 Any questions regarding resource coordinator or free training on brain injury related topics, call Anastasia Edmonston, Project Director 410-402-8478

184. RESOURCES Brain Injury Association of America 703-236- 6000, www.biausa.org Brain Injury Association of Maryland 410-448- 2924, www.biamd.org Ohio Valley Center For Brain Injury Prevention and Rehabilitation, 614-293-3802, www.ohiovalley.org. Excellent SA TX resource & information www.headinjury.com. Good resource for memory aides and tips

185. The Michigan Department of Community Health Web-Based Brain Injury Training for Professionals www.mitbitraining.org This free training consists of 4 module that take an estimated 30 minutes each to complete. The purpose of the training is twofold, to “ensure service providers understand the range of outcomes” following brain injury and to “improve the ability of service providers to identify and deliver appropriate services for persons with TBI”

186. Resources The University of Alabama Traumatic Brain Injury Model System has created the UAB Home Stimulation Program. This program offers many activities for use by individuals with brain injuries, their families and the professionals who work with them. The activities are designed to help support cognitive skills and can be done in the home setting. The Home Stimulation Program can be accessed from the Internet at htt://main.uab.edu/show.asp?durki=49377. For further information contact: Research Services, Dept. of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, 619 19 th St. S SRC 529, Birmingham, AL 35249-7330/ 206-934-3283. Tbi@uab.edu. Tbi@uab.edu

187. Resources Rehabilitation Research and Training Center on Traumatic Brain Injury Interventions & New York Traumatic Brain Injury Model System at the Mount Sinai School of Medicine and the Mount Sinai Rehabilitation Research and Training Center www.mssm.edu/tbinet

188. Recommended Reading I am the Central Park Jogger: A Story of Hope and Possibility by Trisha Meili, 2003 Every Good Boy Does Fine: A Novel by Tim Laskowski, 2003 Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out by Claudia Osborn, 2000

189. A Product of the Maryland TBI Partnership Implementation Project, a collaborative effort between the Maryland Mental Hygiene Administration, the Mental Health Management Agency of Frederick County and the Howard County Mental Health Authority 2006-2009 Support is provided in part by project H21MC06759 from the Maternal and Child Health Bureau (title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Service This is in the public domain. Please use and distribute widely.