Reorientation Syndrome Emptiness and Loneliness after TBI€¦ · Emptiness and Loneliness –...

Emptiness and Loneliness – Reorientation Syndrome (RS) after TBI TBI-Challenge 2013

N. Steinhoff, Fed. Hospital/Lower Austria-Hochegg, Brain Injured and Families/Europe Vienna , 09/2013

Reorientation Syndrome Emptiness and Loneliness after TBI

Mechanism, access and solutions to this underestimated and to all problems after TBI

underlying phenomenon

N. SteinhoffFederal Hospital Lower Austria Hochegg

Austrian Association for Traumatic Brain Injury/ÖGSHT Brain Injured and Families-Europe/BIF



Direct impact on the scull and brain- Loss of Neurons- Loss of function- Interaction of centers

- Neuropsychology, Motor, Sensibility, Vision, Hearing, Expulsion

Traumatic Brain Injury?

vorher nachher



TBI is not Stroke – several lesions at one time

TBI cases similar despite wide range of lesionsLack of support is evident

What changes through TBI

AFTER - Traumatic Brain Injury?



Emptiness and Loneliness

Several reasonsLong-Term Correlation to degree

Affected are: Injured, Family, Doctors, Therapists, Social Workers and NHO

Hypothesis – Situation after TBI



Questions

Members of the TBI Association in AustriaSome of other countries

Approach

• Austrian and Viennese Association of TBI• 400 Members (injured, family/caregivers, therapists, doctors, others• 20% injured, 60% family, 15% professionnels, 5% by interest and

politicians



What is the new situation after TBIIs there Emptiness and/or Loneliness, Definition

Reasons Solutions

Questions



TBI = Profund and very individual change of life

– Change of personal capacities (motricity, communication, psychology, emotions)

– Change of family and work situation (position, treatement)

– Change of key persons

– Change of financial situation

– Change of social situation (legal, personal status)

NEW SITUATION AFTER TBI - Reoriention

First of all



• Realising physical and neuropsychological change

• Realising change of interaction with family• Realising change of interaction with others• Realising change of emotions• Long way back - shock

Compared to situation before

REORIENTATION

Key moments



• Suddenly nothing around is satisfying – similar to depression

• Equivalent to ADAPTATION TO NEW SITUATION OF LIFE, to refill with new content

• Emptiness insider and outside• Correlating to individual situation before and after TBI

undulating and varying Emptiness

Emptiness after TBI



• UNDERSTANDING - new situation (injured, family and professionnels)

• SOCIETY - change of interest, mobility, communication, Loneliness

• TIME - there is a lot of time (thinking, substance abuse), lack of occupation

• CONFIDENCE - 'it's not working like before', loss of confidence in own emotions and reaction of others – loss of confidence in daily living)

• ACTIVITY - being frightened, loss of initiative and impulsion, retreat as self protecting reaction), Loneliness

• SPIRIT - EMOTION, self-pity, black ideas and rumination

• EXISTENCE - lack of solution and keys to solve problems of new life

• HELP – legal, organisation and management

Reorientation = Condition with different influencing factors

What is Reorientation - Condition



• Emptiness leads to Loneliness• Loneliness might leave to Emptiness,

but doesn't have to

BOTH part of Reorientation Syndrome

Emptiness - Loneliness



• Personality• Social • Lesions • Impact of change• Pre-morbid situation

(individual, social)• Flexibility • Comprehension reduced

Influencing factors for RS

• Isolation• Treatment by environment• Harassment psych./moral • Social help• Management• Medication• Loneliness • Stigmata



– Poor auto-controle– Emotionaly instabel – former neurotic behavour – Intro-, Extroversion– Self-criticism, Suspect and pessimistic personality– Depression– Predisposition to anxiety– Intellectual capacities – Impulsion– Capacityof mourning– Flexibility– Physical training situation (good and bad -

Impact)

Influencing factors, pre-morbid



Neuropsychological:• Impulsion reduced• Somatisation• Concentration, memory, orientation, attention• Emotional orientation (new situation, delirium)• Changement of personnality • Disrespect of rules• Self-overestimation

Physical:• Mobility • Communication• Incontinence, etc.

Influencing factors, Individual, after TBI

Coping with agresssion against LifeCoping with Stigma/Impact

Post Traumatic Stress Managenement



Depression - PTDS Productive psychosis Anxiety disorder Epilepsy Chronical or repetitive infections Decubitus Pain TRAINABILITY AND RIGHT TIME FOR TRAINING

Medication is not only doing good(fatigue, concentration, memory, gait control, etc.)

Influencing factors – consequences of TBI



Anxiety as a good and protecting emotion is hindering:

– Friends– Work and social

environment– Family– Sickness and stigma– Self-pity – Depression– Retreat– Retreat of whole

familiy

Influencing factors - isolation

– Condamned to be dependent

– Embarrassing (handicap, incontinence)

– Intolerance– Isolation through

environment (familly, society, divorce, loss of children or liaison amoureuses – at every age)



Influencing factors – lack of comprehension

• Family Friends Society Professionnels

(condescention, lack of information)

Lesions and hidden handicap

Information varies depending between countries

Lack of support of professionnels

To much of treatement can produce Emptiness

Lack of training and awareness

= To much and not enough



• Not being taken serious (involuntary harassment)

• Change of place in family

• To deal with the change (injured and family members)

• «I do it for you» (burden of responsibility on both sides – growing pressure)

• Environmental personalities (anxiety, neurotic, open)

• Possibility of withdrawal and personal space

• Living situation (at home, assistance)

• Organisation = Situation of burn-out for injured

Influencing factors – Situation family



- Education

- Finances

- Regulation of legal situation (accident, divorce because of TBI, …) - question of responsabilities for rehabilitation costs (especially government, NHO)

- Retreat (interest and mobility, shame, overprotection)

- Reduction of de respect for injured and families –comprehensive environment

- Pitifulness (humiliation for injured and families)

- Culture and prejudice

- Cradle was high before and is much high after the TBI

Influencing factors – Social situation



• Pre-morbid • Security of family• Individual need of social

contacts• Case manager/Support

and social help

Influencing factors – Quality of Life

• Housing situation• Lesions• Epilepsy and other medical

complications• Fatigue Syndrome

• Large individual margin of daily satisfaction – objective/subjective

• QoL objectively might be great, but can be percievedindividually low satisfactory



• Tout est mesuré comparé à la vie d’avant le traumatisme

• Vieilles Emotions ne correspondent plus à la nouvelle situation

• Sentiment de perte permanente

• Nécessite d’acquérir de nouvelles émotions satisfaisantes pour les situations de vie quotidienne

Influencing factors - Capacité de flexibilité

• Manque d’impulsion, de concentration et de mémoire par séquelle ou dépression

• Capacité de charge personnelle

• Impact de changement

• Personnalité pré-morbide (névrotique, anxieuse, ouverte) et situation sociale (éducation, métier, expérience de vie)

Learning as a question of time and training



• Wanted and not wanted • Family• Work

• To both, injured and family

• The more, the less environment is skilled and the more it is performing oriented

• Burn-out (family and injurd)

Influencing factors - Harassment psychol./moral



• Retreat and Isolatíon (window that opens to loneliness) – vice versa

• Lack of sense of life

• Depression, Post Traumatic Stress Disorder

• Agression et bitterness

• Substances abuse (alcools, medication, drogues)

• Loneliness (families separated, others)

• Suicide

• Burn-out and Herassment - loop

Consequences in life



The new 'Me'

– Before everything was good, now it isn't any more

– Memories of how it should be don't fit any more to the new situation

– Dreams have to adapt



Change of Life

Individual Impact



• Influenced by factors to be individually defined

• Question of every day: 'How can I improve my situation'

• Fear of not being able to solve the problems – Loop

• Old memories persist in body

• Need to find new solutions and match with positive emotions

• Integrate new informations and fill in Emptiness with new content

Reorientation Syndrome - reaction to unknown situation



• Normal daily emotion – safety in new situation to be aquired

• Negative impression with positive touch: – Reflex as answer to danger– Reflex of retreat to get reoriented

• The problem is the havy load becomes more heavy through reduced capacity

• Individual differences to be respected

Impulsion, education, lesion, IQ, doctor and therapist factor , financial, social situation, personal impact.....

Reorientation Syndromeis normal but heavy load after TBI



• Find yourself in a situation, you never wanted to be

• Lesions and consequences• Social situation and

dependency• Refuse to becoma a problem• Self-pitiness

• Need of retreat to define solution

• Doctor Factor: Being frank

Phase of Retreat

– First by lots of work not relaised

– Appears very often suddenly

– Triggers fear, emotional retreat and reduction of communication

– Montain of problems and fear reduce solution finding capacity

– Nothing is as it was– Change of behaviour of

persons arround



• Recalibration of 'intern norms' • New emotionel orientation – less fear • Acceptation of leaving old body memories and

aquire new emotions instead• Starting to develop personal responsabilities • Reduction of suffering • Acceptation of the existing situation of intern and

extern emptiness

• Mourning

• Find the keys for defined problems • Define new contents

Phase of Adaptation



• Lack of time• Load - Responsability• Overprotection as a

feeling of security • Finances

• Depression • Burn-out – Loop

• Individual (IQ, personality, social, impact)

Reorientation Syndrome - family Similar to the injured Fear and powerless in new

situation Retreat

▪ Occupation trough new situation

▪ Harassment (family, work, daily life)

▪ Shame▪ Sociophobia▪ Lack of comprehension



• Doctors, social workers, therapists

• Lack of communication - Loneliness

• Patients difficult (time)

- Lack of information - competence

• Trying to get rid of – «faster, faster»

• Possible condescension to injured and families

• Mutual lack of approval

• Possible rasistic approach to cover incompetence

Reorientation Syndrome - professionnels



• Pay attention to Emptiness corresponds to Prevention (avoid to havy burden, situation without issue)

• Get out of Emptiness = Team work

Approach to support



• Lack of impulsion and Psychosis• Assistance to integrate old keys

and develop new keys for reorientation

• Adaptation of old memories and emotions in new daily life

• Individual support demands comprehension of individual situation (injured and trainer)

• Development of daiyl activitiesto enhace emotinal satisfaction(startig reintegration)

• TB Injured are able to do everything possible

Approach to support - To pay attention– Emptiness is NOT depression or

PTSD– Extreme situation of life with

consequences – Individual approach (personality,

leasions, family, social, pre-morbid, experience, IQ)

– Juridical open situations and Question of responability of happening and rehabilitation

– Carefull integration into Family associations (statistically inscriptions only after 5 years of Life with TBI)

– Harassment psychological and social



Approach to support - To integrate

• Support over a distance to overcome handicap through lack of mobility and reduce transport costs

• Improves safety and rehabilitation at home• Prevention

• TENERE – Teleneurorehabilitation



• Wasting of personal recourses• Professional condescension as

well as at work• Pity• To overtake to much of the life

of injured and families • To ingore indivual approach

and charge to much

Approach of support – To avoid

– To much training– Harassment– Dependancy of relatives– To much help and

intrusion – individual freedom



• Training of trainers and doctors

• Education of people working at for Health responsibles/NHO/SOcial Security

• Evaluation at an indiviuald level

• Cognitive training opportunities

• General attitude to TB Injured and families problems

Approach to support – improve



Reorientation Syndrome - Resume 1

- Results from extreme conditions of life with influencing factors to be individually defined

More impact – more fear – more desorientation –more Emptiness

RS – Challenge always different (culture, impact)

RS valid for Injured AND families

Hypothesis of study met for all points



• Adaptation to new situation hindered through handicap after central nervous lesions

• Depression/PTSD and isolation influence the status of Emptiness and sometimes mutually interact

• 2 phases Retreat and Adaptation

• Legal and/or responsible situation to be cleared

• To get emotionally reoriented takes time• Risk of Burn-out for injured/families at all levels

• Take care of training possibilities (TeNeRe)

Reorientation Syndrome – Résumé 2



• Prevention through taking in account Emptiness – realise also also for Family and Professionals

• Dependency through overprotection/overcharging

• Harassment happens easily

• Keep Treatment appropriate – accept situation at the moment

• Cooperation Injured/Family/Trainers/Doctors/NHO – case manager has to be well educated (trained trainers -experience)

• TBI Associations indispensable (prevention and assistaance)

Reorientation Syndrome – Résumé 3



- Reorientation Syndrome as a common condition and corresponds to a normal reaction,

- More difficult to go through because of theimpact of TBI - Management

- Reorientation Syndrome as a concept is searching its consideration among doctors, case managers and trainers to be communicated to the injured and families

To finish

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