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The Double Whammy: Living with a Brain Injury and
a Psychiatric Disorder
Rolf B. Gainer, Ph.D.
Neurologic Rehabilitation Institute of Ontario, Etobicoke, Ontario Neurologic Rehabilitation Institute at Brookhaven Hospital, Tulsa,
Oklahoma
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Disclosure Statement Rolf B. Gainer, PhD has business relationships with Brookhaven Hospital, the Neurologic Rehabilitation Institute of Ontario, Community NeuroRehab and Rehabilitation Institutes of America. Any of the outcome studies conducted by those organizations and referenced in this presentation are funded by the respective organizations without grants or other research supports.
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addressing the realities of a co-
occurring diagnosis
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today’s goals
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To develop an understanding of the problems faced by an individual with a brain injury and psychiatric problems in
their long term return
today’s goals
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To understand the community-based resources which are
needed by the person with a brain injury and a psychiatric
disorder
today’s goals
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To consider how an amalgam of strategies and interventions are needed to sustain
participation and involvement
today’s goals
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today’s goals
To understand the role of brain injury in the mental health population
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what do we know about TBI?
1.5+ million new cases a year
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what about severity?
75-80% of the brain injuries in the U.S. civilian population are “Mild”
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“Mild” Brain Injuries can have significant long-term
consequences
there is nothing “mild” about Mild Brain
Injuries
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Moderate and Severe Brain Injuries cause significant
disability with physiological, cognitive,
psychological and behavioral changes.
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Brain Injury can create a lifetime of disability
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we could fill six cities the size of Detroit with people living with
the effects of brain injury in America today.
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what groups contain individuals with brain injury?
• Mental Health 25% • Substance Abuse 40% • Prison population 65-70% • Homeless 80%
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what about returning veterans? • Estimated 150,000 – 300,000 have a TBI
(2000-2010) • Nearly 10% of all service members • 30% of all Walter Reed AMC admissions • 18.5% of all service members have PTSD =
472,000 diagnosed with PTSD • 25% are experiencing mental health
problems • 17.5- 22.00/100,000 have attempted suicide
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THE INDEX EVENT
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psychosisdepressionanxietydisordersmaniaaffectivedisordposttraumaticstressdisorderaggressionirr
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every page of the DSM
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where do we find the roots of mental health issues?
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let’s consider brain injury and mental health issues in the
context of social relationships and social
network participation
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what about social role return?
is it a determinant of potential mental health
problems?
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by addressing the realities of a co-occurring
diagnosis
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life changes.
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injury-based changes changes
changes
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every aspect
each relationship
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In the early phases of recovery, some behaviors can resemble a psychiatric illness
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pre-injury mental health problems can be exacerbated by a brain injury
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what came first?
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psychopathology ?
or
neuropathology ?
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Does it mask psychiatric illness?
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Does it mimic psychiatric illness? Does it mimic psychiatric illness?
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what is it?
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the NRIO study
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the people over the course of the study:
614 tracked from 1995-2012 Average age: 31.6
Age Range: 2.11 to 78.7
100% Severe TBI 89.05% MVA
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the NRIO Study:
Social Role Return
Independence/Support Level
Vocational/Avocational Activities
Mental Health and Substance Abuse Issues
Durability of Outcome
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the NRIO cohort • age at injury 31.6
• GCS <9 83.5%
• male/female 67.4% / 32.6%
• period from injury to post-acute 21.00 months
• % MVA related 89.5%
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let’s look at the issues with adults with a TBI and a
psychiatric disorder prior to post-acute rehabilitation
NRIO Outcome Study, Adult Cohort 1997-2012
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2.5 years post injury prior to admission
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36% Pre- and post- injury substances abuse problems
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45% problems with significant other
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45% trouble maintaining relationships with friends
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family members perception of problems post-injury
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The study.
Functional Physical LimitationsChronic Medical Care Needs
Reliance Upon Others for Basic CareTransportation
DepressionCognitive Problems
Behavior and Anger Management Problems
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what our participants saw as key changes in their
lives post-injury
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1 to 5 years after the injury
nrio outcome study, adult cohort
1997-2010
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perception of post-injury changes
• cognition• behavior• emotions• physical abilities• relationships• level of participation• level of independence
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why are the participants perceptions of post-injury
changes different from those of family members ?
relationships participation
independence
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perception = reality
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mental health
and TBI
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Unemployment + depression+ anxiety
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substance abuse
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risk for suicide
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why?
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long term outcomes employment problems
decreased sense of well-being
suicidality risk of seizures
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TBI: Pervasive Effects
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cognitive changes behavioral responses
underlie
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cognitive deficits
post-injury behavioral disturbances
interaction
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behavioral responses contribute to risks
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How do we measure self-worth?
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job, profession, skills
relationships, family, friends
life activities
home/residence ownership
positive feedback
participation with others
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What parts of me will
change after a brain injury?
What parts of me will
adjust after a brain injury?
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aspects of brain injury increase psychological problems over time
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RISK FACTORS related to the onset of mental health problems
• age • pre-injury psychiatric problems • pre-injury substance abuse • poor work/social adjustment
history • problems in support networks
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degrees of separation
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the risk for behavioral health problems increases in the years following an injury
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brain injury
impacts on social role
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33% legal problems due to social behavior & judgment
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36% post-injury substance abuse
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45% problems with spouse or significant other
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88% Problems relating to/ maintaining friends
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what happens
after rehab?
1yr 5yrs 10yrs
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10 years after the injury and rehab
nrio outcome study 1997-2012
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37.3% return to their primary social role without modifications
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43.1% experience a change requiring support and role modification
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0% regression
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19.6% experienced significant psychological problems requiring intervention
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are these the people with a “Dual Diagnosis”?
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coping
styles 2
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avoidance worry blame drugs
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humor relaxation problem- solving
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shift di
sabi
lity
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brain injury creates a risk for a mental health
trajectory • age at onset of disability • male vs. female • low/reduced social supports • financial hardships
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an increase to the risk for crisis…
requiring emergency mental health services
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crisis events increased isolation and withdrawal
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will neurobehavioral problems be
misunderstood?…
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…during a crisis event
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the response to mental health emergencies
where do I go in a crisis?
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does social isolation contribute to the development of
neuropsychiatric symptoms?
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what’s the difference between
isolation and withdrawal?
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is loneliness contagious?
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Meet Rick at 22
mother grandparents
best friend art school
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Rick at 22
Richard at 37
mother
grandparents
best friend
art school
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Brain Injury and Mental Health
• 93.7% of BI providers reported working with dual diagnosis clients
• 48% estimated more than 26% of clients had a mental health diagnosis
• 20% estimated more than 50% of clients had a mental health diagnosis
• 23.1% of mental health providers indicated that clients with BI were not eligible for services
• Source: Toronto Acquired Brain Injury Network newsletter, Spring 2011
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does the person with a brain injury fit the mental health
network?
or
does the person with mental health issues fit the brain
injury network?
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where does the person with both brain injury and mental
health problems go?
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or, will they be on the edge of two
networks?
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What network is the person with a dual
diagnosis supposed to participate in?
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isolation occurs when the person can’t participate…
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they are moved to the edge of the network
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“fitting in” increases opportunity/participation
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social networks affect our lives
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we operate in clusters
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but, how much relates to the person?
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each network has relationship effects
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the circles of relationship
clusters overlap
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is contagion caused by emotional or behavioral changes?
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and, what part comes from social network
membership?
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do networks move people within the
network?
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what about the rippling effect?
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…people who don’t fit are found at the edges
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does the social network theory help us understand what happens to relationships?
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complicate
social networks change size and
over time.
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Social network membership requires
certain behaviors
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where are the answers?
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let’s start small
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what can we learn from children with TBI?
about the issues faced in adulthood?
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brain injury in childhood : the lifespan issues
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Long Term Implications
social isolation due to functional and behavioral issues
high survival rate for moderate to severe
problems 5-8 years post-injury
risk of future mental health issues
need for extended family supports
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brain injury in childhood will effect the person throughout their lifetime, increasing
the risk of mental health problems
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two years later
1997-2009, nrio outcome validation study, pediatric and youth cohort
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20% returned to grade level
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40% required program changes
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40% required psychological supports
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60% returned with modified social role
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today’s child with
TBI is tomorrow’s
adult
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can we see the roots of problems in adulthood
when we look at children with a severe brain injury?
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Meet Bobby at 9
siblings
mother father grandparents
school
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Bobby at 9 Rob at 20
Robert at 40 Mr. Ford at 68
Bob Ford at 80
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children
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parents
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participation declines
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community
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does rehab ever
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how does
TBI impact social role?
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“fit problems”
Cognitive Behavioral Emotional Physical
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4 components of a social network
family friends
work community
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as changes to the person’s social network
occur and functional problems increase with
age, what happens?
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neuropsychiatric and neurological features
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brain injury: a STARTLING
reality
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positive and negative roles
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Helper Worker
Friend Caregiver
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helpless unemployed
patient
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what happens to the person who isn’t
able to give?
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Meet Walter at 55
daughter wife son father
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Walter at 55
Walter at 65
daughter
wife ex-wife
son father
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the distancing
effect
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loss of interpersonal connectivity
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social role adjustment
it’s complicated.
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the TBI Bias: one year later an elevated risk
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are these the people with a “Dual Diagnosis”?
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neuropsychiatric features of brain injury
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lasting psychological and social functioning problems
unemployment
dependence
aggressive behaviors
family strain depression
diminished relationships
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cognitive problems
social withdrawal
memory problems
emotional response to injury
executive dysfunction
impulse control
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brain injury and mental health problems reduce the number of available connections…
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people move towards the fringe where there are fewer connections to make
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living on the fringe of two networks:
Brain Injury or Mental Health
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and an increased separation from the center of pre-injury networks of family,
friends, work and community…..
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how do TBI and Mental Health problems impact on social networks?
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7N6 76% unemployed
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what about severe brain injury?
what factors prevent participation?
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The Canadian Study by Dawson and Chipman
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61% depression
7+ yrs post-injury
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apathy
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66% need ADL
assist
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90% dissatisfied
with social life
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75% unemployed
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47% not using
telephone
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27% not socializing
at home
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35% unmet needs
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43% concerned with the
realities of a long-term disability
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dissatisfied
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isolation
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isolation & social withdrawal stifle interaction
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does apathy +
isolation = depression?
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Let’s look at a study involving people with TBI living in nursing homes
staff report that 50% could be living
elsewhere
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but, where?
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where you live can make you depressed
neighborhoods with poor social cohesion increase likelihood of
stressful events
Ahern and Gales, Collective Efficacy and Major Depression in Urban Neighborhoods. Am J Epidemiol 2011 April 28
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does TBI disability create a forced choice…
by moving people away from social networks?
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does marginalization set the person up for mental
health problems?
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or does the person’s mental health problems set
them up for marginalization?
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another chicken or egg problem?
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Where’s the data?
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few resources that support independence
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what about mental health and aging
with a severe brain injury?
what are the barriers?
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brain injury accelerates psych conditions
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the TBI Bias: one year later an elevated risk
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aging with a brain injury
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by 80 the average person has 3
disabling conditions…
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Remember Bobby?
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Bobby at 9 Rob at 20
Robert at 40 Mr. Ford at 68
Bob Ford at 80
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support & care needs increase
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functional abilities
required supports
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what happens when a caregiver dies?
where does the person go?
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change in routines
economic upheaval
problems associated with loss of a loved one
search for other caregivers
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social network and aging
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why don’t we ever talk about the real costs?
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disability aging
$$$$$$$ +
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$15 million projected over the person’s lifetime
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TBI: The Ultimate Stressor
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barriers to reintegration increase
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lack of resources
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restrictive settings
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divergent treatment
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what about the people?
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how can we reach out to the person better?
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better tools, better skills
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building relationships between service providers
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making supports work through integration
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helping the person return to their lifestyle
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prevention and wellness strategies
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supporting caregivers to sustain the person
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enhancing participation
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responding to costs of
lifetime disability with
real $’s
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creating the right resources and expertise
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plan and measure
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what’s important?
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• Early identification and intervention • Development of mental health resources
with TBI expertise • Understanding risk factors • Creating a capacity to respond to crisis • Providing ongoing supports in the home
and community • Providing caregiver support
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can we fix what is broken?
are we committed?
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thank you.
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nri at brookhaven hospital
201 South Garnett Road Tulsa, Oklahoma 74128
traumaticbraininjury.net 918-438-4257
888-298-HOPE (4673)
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nrio 59 Beaver Bend Crescent
Etobicoke, Ontario M9B 5R2
416-231-4358 nrio.com
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This presentation can be found at:
traumaticbraininjury.net under “Resources”
Disclaimer: Rolf B. Gainer, Ph.D. has business relationships with the Neurologic Rehabilitation Institute of Ontario, the Neurologic Rehabilitation Institute at Brookhaven Hospital, Community Neuro Rehabilitation of
Iowa and Rehabilitation Institutes of America. The NRIO Outcome Validation Study is supported by the Neurologic Rehabilitation Institute of Ontario
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