Understanding Life with Brain Injury Judith Avner, Esq. Executive Director December 11, 2013 Brain Injury Association of New York State
Life with Brain Injury • Brain injury is the silent epidemic • 3.1 million Americans live with a brain injury • A brain injury occurs every 18.5 seconds
People with Brain Injury Speak • BIANYS surveyed individuals with brain injury • Overall, the majority of individuals surveyed were satisfied with the services they receive. • This suggests that the providers of TBI services are doing a good job.
People with Brain Injury Speak, (cont’d.) • However, the individuals surveyed wished that: • Staff had more information and understanding of life with a brain injury, and • Staff were more familiar with working with individuals with a brain injury
Understanding Life with Brain Injury Training • Developed by BIANYS in response to comments • Developed for DOH TBI waiver providers • Originally for Home and Community Support staff (HCSS) • Train the Trainer format
Jump Drive/Training Materials • Script • Slides • Handouts • DVD
This training will: • support direct care staff in your work • increase professionalism • promote respect for the work of direct care staff • improve the quality of services to individuals with brain injury
Ice Breakers/Introductions • Why? • The Neural Connection • Twenty Characteristics of Brain Injury • Empathy Box
The Brain FRONTAL Controls everything we do …breathing …walking …talking …thinking …behaving …feeling TEMPORAL PARIETAL OCCIPITAL
Definition – Acquired Brain Injury • Injury to the brain which is not hereditary, congenital or degenerative, and may include brain damage resulting from events such as stroke, aneurysms, anoxia from near drowning, or traumatic brain injury (TBI)
Definition – Traumatic Brain Injury • Traumatic brain injury is a specific type of damage to the brain that results when the head: • hits a stationary object (e.g., windshield in a car crash) • is hit (e.g., mugging) • is penetrated (e.g., gunshot wound) • is violently shaken by external force(e.g., Shaken Baby Syndrome, severe whiplash) • Often included, especially in terms of service provision groups, are individuals with other types of post-natal acquired injuries, such as strokes or aneurysms.
Which of these would NOT be classified as an Acquired Brain Injury? A. Aneurysm B. Alzheimer’s Disease C. Anoxia D. Traumatic Brain Injury (TBI) E. Concussion
Acquired Brain Injury Includes: • Aneurysm • Stroke • Encephalitis • Anoxia • Traumatic brain injury- Gunshot wound- Head hitting windshield- Severe whiplash- Shaken Baby Syndrome - Concussion - Blast injury
Acquired Brain Injury Excludes: • Congenital Disorders • Intellectual Disabilities • Cerebral Palsy • Birth Injuries • Progressive Disorders • Alzheimer’s Disease • Psychiatric Disorders • In which there is no known or obvious central nervous system damage
How Brain Damage Occurs • The brain is a very complicated organ, with millions of cells and connections. • While specific areas of the brain may be related to specific functions, in reality each function (walking, lifting an arm, speaking, etc.) involves many areas of the brain communicating and interacting with each other.
How Brain Damage Occurs Damage to the brain may vary in extent, area and type of damage depending on a variety of factors relating to the nature of the injury, the severity of the injury, how the injury occurred, the quickness of medical response and so on.
How Brain Damage Occurs in a TBI • Focal Damage • Skull Fracture • Contusion or bruises under the location of a particular area of impact • Fronto-Temporal Contusions/Lacerations • Bruising of brain or tearing of blood vessels in the frontal and temporal lobes of the brain caused by brain hitting or rotating across ridges inside skull • Diffuse Axonal Injury • Shifting and rotation of brain inside skull will result in tearing and shearing injuries to the brain’s long connecting nerve fibers or axons
FOCAL DAMAGE Diffuse Axonal Injury Fronto-Temporal Regions
How Brain Damage Occurs in a TBI • Hematoma (Blood Vessel Damage) • Brain Swelling • Increased Intracranial Pressure • Intracranial Infection • Seizures Some time after the injury the following may affect the brain:
How Brain Damage Occurs • If the brain damage is from a medical incident that results in an infection, swelling of the brain or anoxia, the damage tends to be more diffuse • If the brain damage is related to a medical incident like a stroke or aneurysm, the damage tends to be more focal
Most individuals with brain injuries exhibit the same challenges and should be given the same level and type of care. True or False?
Every Person with Brain Injury is Different There are vast differences from person to person because: • Every individual is different prior to an injury • Every brain injury is different Damage to the brain may vary in extent, area and type of damage depending on a variety of factors relating to the nature of the injury, the severity of the injury, how the injury occurred, the quickness of medical response among other factors.
Every Person with Brain Injury is Different • Every person with a brain injury adjusts differently to the change that result from brain injury • Therefore, every person with brain injury needs differing types and levels of support
Results of Brain Injury They can be categorized into the following broad functional areas: • PHYSICAL • COGNITIVE • EXECUTIVE FUNCTIONING • AFFECTIVE/BEHAVIORAL • PSYCHOSOCIAL
Common Problems After Brain Injury - Physical Loss of Smell and Taste Hearing Loss Visual Difficulties Balance Difficulties Dysarthria Motor Control and Coordination Fatigue Seizures Decreased Tolerance for Drugs and Alcohol Headaches Sleep Disturbances
Common Problems After Brain Injury - Cognitive Short Term/Working Memory Attention Concentration Distractibility Decreased Verbal Fluency/Comprehension Information processing Arousal Problem Solving Changed Intellectual Functioning Abstraction and Conceptualization Slowed Reaction Time
Common Problems After Brain Injury – Executive Functioning Goal Setting Self-Monitoring Planning Initiating Modifying Bringing to Completion
Common Problems After Brain Injury - Affective/Behavioral Impulsivity Emotional Lability Irritability Decreased Frustration Tolerance Impaired Judgment Tension/Anxiety Depression Aggressive Behaviors Disinhibition Changed Sexual Drive Changed Personality
Common Problems After Brain Injury - Psychosocial • Educational/Vocational Problems • Family Issues • Interpersonal Difficulties- Intimacy/Sexuality- Dependency Issues- Alcohol/Drugs • Intra-Personal Difficulties- Loss of Self Esteem- Depression/Frustration- Shaken Sense of Self- Profound Sense of Loss
A common result of brain injury is loss of long-term memory: individuals cannot remember who they used to be. True or False?
Results of Brain Injury These are just lists of resulting problems that may occur. Not all individuals with a brain injury will have all these problems and each person may have a different combination of problems or “deficits”.
Results of Brain Injury Remember, since you are talking about a brain that started out intact and then was damaged, people with brain injury will also have many intact abilities. This is you or me with some areas of function changed.
Working with Persons with Brain Injury It is very important to understand the individuals you work with so that you know what they are capable of doing for themselves and what they need help with (e.g., the type and level of support).
How Can You Know • Read/Review • Observe • Ask Questions • Don’t Assume ROAD to help and support an individual with a brain injury. You need to be a professional willing to learn about the individual you are being trained to support.
Read/Review • Any written information you are given • The service plans • Any medical information shared with you • Neuropsychological reports * Note that this information may be medical, technical or academic
Read/Review However, this information may: • alert you to problem areas to take into account and observe • provide you with areas of strength on which to focus strategies for support Over time, the information you provide from your observations probably will be included in these reports.
Observe • Observation: Paying attention to the person you are working with, and “hypothesis testing”, will allow you to learn about the person you are trying to serve.
Ask Questions Do not be afraid to seek information relevant to the work you are doing to support the individual by asking questions: • of the individual you are serving • of family members and friends • of other professionals working with the individual • of your supervisor
Don’t Assume • Don’t Underestimate: Individuals with brain injury may have many skills and abilities which enable them to be more independent than you may think.
Don’t Assume • Don’t Overestimate: Individuals with brain injury do have intact abilities and skills, but if they are on the waiver, they also have areas of need that may not be readily visible. For example, what looks like a personality trait or a willful decision, may be a brain related behavior.
Don’t Assume • Don’t forget to recognize who you are and what you bring to the table. • Don’t forget to recognize who the individual is beyond the brain injury.
Things to remember • You work for the individual with brain injury • Stress strengths – yours and theirs • Be honest but gentle and tactful • Don’t take things personally • Treat everyone with dignity and respect • Don’t talk down to people
Things to remember • Allow for grief • Avoid arguments and blame • Respect differences • Understand your own and the person’s cultural and personal values • This is hard! • Progress may be slow, but keep at it, it works!
Things to remember • Take care of yourself by seeking supervision and support from your supervisors and other providers • Give yourself a pat on the back for a job well done
Individuals with brain injuries want to be treated in a way that recognizes their ability, as well as their disability. True or False? 45
Communicating with Individuals with Disabilities • Use “People First” language • Treat adults as adults • Listen attentively • Speak directly to the individual • Relax
Interacting with People Who Look and Act Differently • Should you look at people with mobility issues or a disfiguring disability? • Should you risk them thinking you’re staring at them? • Should you ignore them, avoiding eye contact and risk making them feel ostracized?
Interacting with People Who Look and Act Differently (cont’d.) • Should you help someone who seems to be having difficulty getting his/her wheelchair up an incline? • What do you do when you can’t understand someone with a speech disability?
Supporting Individuals with Brain Injury as “People First” • Balance between encouraging independence and protecting individuals with brain injury • Changes in individual capacity and ability
Personal Dignity • Offer, not impose • Ask questions in “people first” language • Relax , you’re on the same side!