Challenges of working with a traumatic frontal lobe brain injury

1. Challenges of working with a traumatic frontal lobe brain injury Bobbie, Caroline, Jason and Jo

2. Content • Interventions • Functional analysis • Behavioural interventions • Aims of cognitive rehabilitation • Group work &systemic support • Organisational issues • National policy& guidance • Ethical issues • Introduction and definitions • Neuroanatomy • Frontal lobe – overview • Orbitofrontal damage • Brain injury –terms • Associated head injury difficulties • Executive difficulties • Frontal lobe specific difficulties • BADS • Epidemiology • Critique • Psychological Issues • Emotional impact • Behavioural difficulties • Systemic issues • Theoretical stance

3. INTRODUCTION & DEFINITIONS

4. Brain injury Types of injury: • Acquired brain injury (ABI) “Damage to the brain, which occurs after birth and is not related to a congenital or a degenerative disease. These impairments may be temporary or permanent and cause partial or functional disability or psychosocial maladjustment .” The World Health Organization (1996) • Traumatic brain injury (TBI) “Traumatic brain injury (TBI), a form of acquired brain injury, occurs when a sudden trauma causes damage to the brain. TBI can result when the head suddenly and violently hits an object, or when an object pierces the skull and enters brain tissue.” National Institute of Neurological Disorders and Stroke (2012) Difficulties • Lack of consistency with definitions • Brain injury network (2012) has called for this to be addressed

5. Types of Traumatic brain injury • Three types: • Concussion: An impact to the head that jars the brain and temporally disrupts its normal functioning • Closed head injury: A concussion or head trauma, the symptoms of which include loss of consciousness after the trauma, confusion, headache, nausea or vomiting, blurred vision, loss of short-term memory and perseverating. • Contusion: A severe head trauma in which the brain is not just jarred but the impact also causes bruising to the brain. (Davey 2008; p.504)

6. Neuroanatomy

7. Frontal lobe - Overview • Emotional control centre and home to personality • Area of brain where damage presents with broadest range of symptoms (Kolb & Milner, 1981) • Involved in motor function, spontaneity, problem solving, memory, judgement, language, initiation, social and sexual behaviour and impulse control • Damage can affect flexibility of thinking, problem solving, attention and memory even following a ‘good’ recovery from a TBI (Stuss et al., 1985) • MRI studies identified frontal as most common region of injury following mild to moderate traumatic brain injury (Levin et al., 1987)

8. Orbitofrontal cortex damage • Area of the brain associated with: • regulating planning behaviour • sensitivity to reward and punishment • ToM • sensory integration • representing the affective value of reinforcers, and decision making & expectation • Destruction of the OFC through acquired brain injury typically leads to a pattern of disinhibited behaviour. Bechara et al,1994;Kringelbach, 2005; Schore, 2000; Stone, Baron-Cohen, & Knight, 1998; Snowden et al 2001

9. Associated head injury difficulties • Epilepsy • Hormonal changes • Coma • Marital breakdown • Loss of self • Relating to others • Executive functioning (Dysexecutive syndrome)

10. Executive functioning - Historical • Abnormal cognition and behaviour following the war (Luria, 1966) • First documented case Phineas Gage (Harlow, 1848) Costandi, M (2010) • Early EF models described it in unitary, homogenous terms with no individual components and generalised to the frontal lobes, “frontal lobe syndrome” (Anderson, Jacobs & Anderson 2008, p. xxviii)

11. Executive functioning - Definition • Limitations of frontal lobe syndrome (Anderson, Jacobs & Anderson 2008, p. xxviii) • EF umbrella term describing a range of highly complex and interrelated group of cognitive phenomena such as: • attention control, inhibition, working memory, goal setting, planning, problem solving, multi tasking and abstract reasoning (Senn, Espy, & Kaufmann, 2004; Welsh, Pennington, & Groisser, 1991) • In order to achieve a goal-directed behaviour (Levin & Hanten, 2005; Lezak, 2004). • Critique Agreed upon definitions problematic (Anderson, 2008; p. 6)

12. Executive functioning – Models • Should be theoretically sound, encompass the various cognitive functions, explain the different presentation of impairments, provide a link between brain and behaviour and be able to suggest assessment methods as well as interventions (Gioia, Guy & Isquith, 2001; p.329). • Self Regulation model; the ability to inhibit behavioural responses (Barkley, 1997) • Developmental model; how EF profile develops in children(Anderson, 2002). • (for brief review of prominent EF models see Anderson 2008). • Critique- No one model has been uniformally accepted but, current work is evolving at defining an integrated one see Cascade-of control model (Banich, 2009)

13. Working Memory • One leading model that addresses Gioia et al (2001) recommendations is the working memory model of Baddeley and Hitch (1974; see also Baddeley 1997 and 2001); • Two discrete functions holding information as the focus of attention and the retrieval of information from long term memory (Spillers, & Unsworth, 2011; p, 1532).

14. Baddeley’s working memory model • Baddeley’s working memory model (2001) Central Executive Visuospatial Sketchpad Episodic buffer Phonological loop Visual Episodic Language Semantics LTM

15. Deficits in Executive Functioning • TBI can lead to deficits in executive functioning such as working memory, in particularly the central executive of Baddeleys model, where it is argued that the systems impaired are collective known as Dysexecutivesyndrome (DES) (Wilson, Alderman,Burgess, Emslie, and Evans 2003; p. 33) • DES is used as umbrella term to describe a pattern of deficits in executive functioning such as planning, abstract thinking and behavioural control (Baddeley 1988; p214) • Assessment of these deficits are typically conducted using performance based neuropsychological tests (Gerstadt, Hong, & Diamond,1994) • Critique ecological validity of such tests has been questioned because the tests are highly structured, administered in a distraction-free environment, and in some instances, provide cues on how to respond (Goldbery & Podell, 2000)

16. Neuropsychological assessments • Two test that address these criticism are the Behavioural assessment of the Dysexecutive Syndrome (Wilson, Alderman, Burgess, Emslie, & Evans 1996) • Delis–Kaplan Executive Function System both of which use a battery of test to identify specific executive functioning deficits (D-KEFS, Delis, Kaplan & Krammer, 2001) • The BADS (1996) is designed to require participants to plan, initiate, monitor and adjust behaviour in response to the explicit and implicit demands of a series of tasks using six test, such as the zoo map which test the ability to plan while following a set of rules. It also contains the 20 item dysexecutive questionnaire which lists statements common problems of everyday life and to rate them according to their personal experience (Wilson, Alderman,Burgess, Emslie, and Evans 2003; p. 33). • While the D-KEFS (2001) aims for a similar goal in both children and adults but using nine tests. It is also able to be utilised in different clinical populations from TBI like multiple sclerosis (Parmenter et al, 2007)

17. Epidemiology ?

18. PSYCHOLOGICAL ISSUES

19. Interpersonal issues • Difficulties with empathy, perspective taking and cognitive flexibility (Grattan, 1994) • Theories of interpersonal relationships • Attachment theory • Social exchange theory (Homans, 1958) • Human relationships formed by use of cost-benefit analysis & the comparison of alternatives • (Although some critique re. basis in economic theory; based on openness which not relevant to all & places relationships in linear structure rather than flexible in path followed – Miller, 2005) • Uncertainty reduction theory (Berger and Calabrese, 1975) • Individuals seek to reduce uncertainty with each other when first interacting, based on self-disclosure • Critics discuss driving force of interaction is desire of positive relational experiences (e.g. Sunnafrank, 1986)

20. Interpersonal issues • All discuss in some form a sense of giving and receiving of emotional and/or cognitive information • Empathy positively associated with relationship satisfaction, negatively associated with depression and conflict; depression and conflict negatively associated with relationship satisfaction • (Cramer, 2010) • Cognitive flexibility positively related to interpersonal effectiveness • (Adler, Rosenfold & Proctor, 2007)

21. Systemic issues Neighbours/society Colleagues Extended family Parents Partner Children Friends Employer Healthcare/social professionals

22. Emotional issues • Major depressive disorder (MDD) may be the most common and disabling psychiatric condition in individuals with TBI • Poorer cognitive functioning, aggression and anxiety, greater functional disability, poorer recovery, higher rates of suicide attempts, and greater health care costs associated with MDD after TBI • (Bombardier et al., 2010) • Incidence of major depression among 559 people with traumatic brain injury was nearly eight times greater than would be expected in the general population • "less than half of the people who were found to have major depression received any treatment during the first year“ • (Fann et al., 2010) • Treating depression can be effective and can decrease functional impairment, somatic symptoms, and perception of impairment • (Varney et al., 1987)

23. Theories of depression • Theories of depression • Learned helplessness theory: Clinical depression may result from perceived absence of control over a situation’s outcome (Seligman, 1975) • When suffering uncontrollable events, can impact on emotions, aggressions, physiology and problem-solving tasks (Roth, 1980) • Critique • Does not account for varying reactions to same situations (Peterson & Park, 1998)

24. Emotional Impact • “Coping refers to the persons’ cognitive and behavioural efforts to manage (reduce, minimise, master or tolerate) the internal and external demands of the person-environment transaction that is appraised as taxing or exceeding the person’s resources.” • Folkman, Lazarus, Gruen & DeLongis (1986, pg. 572) • Direct result of the structural lesion • Psychological reaction to the lesion (Brown et al, 1988) • Somatising • Evidence for both

25. Adjustment • Adjustment disorders • Many patients suffer poor psychosocial adjustment and experience a reduced quality of life • Wolters et al. (2010) • Effectiveness of psychotherapy and adjustment • Ratzel-kurzdorfer, Franke & Wolfersdorf (2003) • Strain & Newcorn (2006)

26. Behavioural difficulties associated with frontal lobe injury impact • Challenging behaviour • CAROLINE

27. INTERVENTIONS

28. Functional analysis “challenging behaviours exhibited by those with ABI are significant obstacles to achieving successful rehabilitative outcomes.” “the neurorehabilitation field has been slow to embrace the practice of functional analyses” Rahman, Oliver & Alderman(2010, pg 212 - 13) Rahman et al (2010) 9 ABI survivors with challenging Behaviours • method - descriptive functional analysis. • Found – all participants exhibited at least one behaviour which was socially reinforced. • - Functional analysis was a useful assessment intervention • Recommended - Assessment using functional analysis in the field of neurorehabilitation. • Critique - There were a variety of injury types and frontal lobe damage was not specified. Clinical interventions based on functional assessments are still limited. (Ager & O’May, 2001)

29. Behavioural approaches • Behavioural treatment models have been successfully applied for ABI (Corrigan & Bach, 2005) • Rahman et al (2010) “such behaviours can be decreased and managed by adopting treatment approaches based on operant conditioning.” any combination of 3 contingencies (Carr,1977) • Social positive reinforcement. • Social attention, or tangible items /activities (Kodak, Northup and Kelley, 2007) • Social-negative reinforcement • Behaviours which remove postpone or reduce aspects e.g not needing to do tasks or engage in social contacts (Iwata, Pace, Kalsher, Cowdery, & Cataldo,1990 ) • Automatic reinforcement • non environmental BUT internal e.g. perceptual feedback (Lovaas, Newsom & Hickman, 1987) Pain attenuation (Sandman & Hetrick, 1995)

30. Aims of cognitive rehabilitation • Teaching the patient and family to adapt their lifestyle • Taking into account the severity of cognitive and behavioural problems • Patient being stimulated to learn new skills and compensatory strategies • To return to activities of daily life and participate in society • Wilson (2000)

31. Cognitive Rehabilitation - an approach Parente (in Shaughnessy & Beyer, 2010) An approach (American) incorporates therapy group and individual work. Using around topics identified by client and family surveys prior to therapy; Memory training - devices – mobile phones, digital recorders , planners and checklists Disinhibition and hostility – learning to defuse situations , cue words. Emotional dysregulation & Impulse control – Medication, making client aware of issue, looking at scenarios and possible responses. Less aware of normative social behaviour – teach techniques, pair work, video recordings. Other Psychological effects Loss of hope Co-occuring PTSD Shame and embarrassment (around social behaviour)

32. Organisational • Local issues – referrals into neuropsychological services • Head injury and PTSD? Who treats them? • NHS vs private, increasing pressure to meet targets and prove effectiveness in outcome measures, impact on actual treatment received? • Increase in traumatic brain injuries in veterans returning from war • America, rehab, v pricey • Who provides rehabilitation? • JO AND CAROLINE

33. Organisational NICE guidelines, but only for Triage, assessment, investigation and early management of head injury in infants, children and adults Head injury It does not address the rehabilitation or long-term care of patients with a head injury (NICE 2007). There was an action plan of services for Acquired brain injury In Northern Ireland in 2009 The plan suggested amongst other suggestions; • Making the services more Joined up • Standardised care pathway including targets around waiting times • improving information around prevalence to plan future service provision • Recognising the importance of family support & importance of promoting independence • Support education and training of staff . Between 2009/10 and 2011/12 and additional £1.2 million was invested in implementing these changes No equivalent yet in England and Wales although British Society of Rehabilitation Medicine has called for a joint framework between employment , social services , and independent/voluntary providers to guide brain injury services (British Society of Rehabilitation Medicine 2008; p. 3)

34. Organisational National Audit Office ( 2011)Report Almost £1billion wasted through people with neurological conditions being unnecessarily admitted to hospital. The MS Society, Motor Neurone Disease (MND) Association, Parkinson’s UK Neurological Alliance, Neurological Commissioning Support – urging Government to create a targeted, properly resourced national strategy for neurological conditions which would include acquired brain injury.

35. Issues of ethics and capacity • Communication problems • Family issues • Informed consent • Avoidance of asking re. problems with sexual functioning • DNA policy – appropriate for FL patients (Spontaneity, impulse control, disinhibited behaviour etc.) • Clinical responsibility / Organisational • Which services are best to deal with traumatic brain injury and in particular support with the challenging behaviour? • Social care needs • Compensation claims

36. Ethical issues • Sexual difficulties – under acknowledged, lack of information Study by Rolls, Honack, Wade and McGrath (1994) Problematic sexual behaviour in patients with frontal lobe damage that they studied e.g. - sexually explicit language, - actual sexual advances - being over friendly, kissing and hugging - exposure Difficulties for the patient and partner Patient information (e.g. Headways) mentions sexual difficulties (? Psychological ) Orbital frontal lobe damage – peculiar sexual habits Headway (charity) – suggests; - sexual counselling from e.g. Relate - a clinical neuropsychologist who specialises in sexual relationships

37. Summary

38. Discussion Points • What would be different if it was an organically caused brain injury? • Impact on client, carer, wider system, CP • What issues would be unique to TBI? • How would impact of CP differ?

39. Questions

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45. Further reading National Policy and guidance • Brain Injury Association of America • National Institute of Neurological Disorders and Stroke (NINDS) • Brain Injury Association of Canada • Brain Injury Association of Queensland Australia • Headway - the brain injury association • Ontario Shores Centre for Mental Health Sciences • Ontario Brain Injury Association • NICE guidelines, but only for Triage, assessment, investigation and early management of head injury in infants, children and adults Head injury (CG56 • It does not address the rehabilitation or long-term care of patients with a headinjury • http://www.nice.org.uk/nicemedia/live/11836/36260/36260.pdf • Rehabilitation following acquired brain injury National clinical guidelines - by Royal College of physicianshttp://bookshop.rcplondon.ac.uk/contents/43986815-4109-4d28-8ce5-ad647dbdbd38.pdf • Included recommendation for clinical psychology provision! per 500000 of population (pg18) • More British ones – found at Headwayhttp://www.headway.org.uk/home.aspx