Making it up as we go along: Rehabilitation of confabulation in people with acquired brain injury

Jessica Fish [email protected] Social New puppy Joe Identity Social animal “Happy chap” Determined Parents Close friends 24 years of age Identical twin & sister Support workers Lots of interests Laid back High achiever Private

Severe TBI in fall Bilateral frontal and temporal lobe damage

Cognitive Physical Mood Attention • Great recovery from • Generally good • Reduced processing speed early days • Good divided attention Communication • Resilience • Mild balance & co- • Good coping skills • Dysarthric speech, but ordination problems Executive functions • Some frustrations and easy to understand. • Diminished smell, taste • Good initiation and emotion mild anxiety (re: • Worry about seeming • Mild hearing loss regulation limitations) • Challenges with goal neglect immature • Mild loss of dexterity: R and complex planning fingers • No pain, headaches Memory • Mild fatigue • Retrograde amnesia 1-2yrs • Problems with learning and Functional retrieving information • Lives with family • ’Islands’ of facts, connected • Independent with personal care with imagination • Parents handle domestics, finance  Confabulation Goals • Busy week: many classes & leisure

• Goes out with others Awareness • Increase independence • Walks dog alone • Emerging • Family & support worker training • Not working • Fluctuating • Improve interpersonal skills • Full-time support worker Recognition Memory (Cleveland RMT, Mack)

Controls

1st Half 2nd Half

V

 72-item RMT for abstract verbal and nonverbal stimuli  Yes/No plus confidence NV  First and second half scores False alarms included episodic content

I definitely heard that one before – I remember not knowing what it meant the first time around!

Confabulation is…

…the production of false memories or personal narratives without apparent awareness or intention to deceive (Fotopoulou et al., 2007) Four categories of theory (Kopelman, 2010)

Context confusion/source Motivational: personal bias monitoring/reality + executive failure monitoring Conway, Fotopoulou Korsakoff, Schnider

Trace Interactionist: imagination, specification/verification: ABM + source monitoring editing/suppression failure Johnson, Kopelman Moscovitch, Burgess & Shallice Kopelman’s (2010) model Treatment of Confabulation

• High rate of spontaneous recovery: 7/8 recovered at 18 month follow-up (Schnider et al., 2000) • Schnider (2001) • No trials (poor theoretical understanding?) • Suggested management approach: • Risk assessment and management • Education: staff and relatives • Maximise engagement in productive activity • Refrain from direct challenges • Ptak (2010): limit production via environmental/proactive approach • Fotopoulou (2008): additional need to consider and explore ‘motivated’ content Persistent Confabulation

• Even fewer published cases • Interventions include: • Training self-monitoring of behaviours associated with the confabulation (Dayus & van den Broek, 2000) • Using a memory diary to reduce ‘gap-filling’ confabulatory errors (Burgess & McNeil, 1999) Guiding Principles in Clinical Neuropsychology Influenced by Prigatano, Wilson, Evans & others

Generate Create Respect Follow the evidence shared individual evidence Use goals to where it is understand- values base drive rehab lacking ing through formulation

• Culture • Published studies • Personality • Meta-analyses • Sense of identity • Guidelines • Measurement • Theory • Feedback • Publishing • SMART • Dynamic • Person-centred • Whole person • Interdisciplinary • Range of models

10 Developments in clinical psychology

First wave behaviour therapy

Positive Remove (apply) (remove) Reinforcement Attention, Stop Strengthen response praise demands Punishment Shouting Time out Weaken response Developments in clinical psychology

Second wave cognitive behavioural therapy Developments in clinical psychology

Third wave therapies OZC rehab 6+12 week programme Increasing independence in cooking, travel, hobbies, support worker training.

Mood goal “For the confabulations not to affect me emotionally”

Engagement Validation, curiosity, shared language

Formulation Exploring impact, psychoeducation, test results, exploring themes, reconceptualising experiences On what confabulation is and why it happens

Video 1 Things about me Lucid dreaming & twin’s Brain Injury Cognitive challenges similar experiences Affecting temporal Memory: gaps and ‘over-familiarity’ Love of stories lobes and PFC Executive functions: self-monitoring Creative imagination difficulty interferes with fact- checking

Recurring themes & structure Confabulation Elements of truth Good guy/bad guy Memories of real events get Love interest interwoven, e.g. trips, hobbies Something bad happens FEELS REAL! Some bits that are just true

Money

Am I going Memory is mad?! challenged Confusion, What if I’m Constant reminder of what’s changed frustration, right/it’s true? “Feel like ‘pre-injury’ me never worry existed, others put him on a pedestal” OZC rehab 6+12 week programme Increasing independence in cooking, travel, hobbies, support worker training.

Mood goal “For the confabulations not Learning to compensate to affect me emotionally” General diary, key question, “detective procedure” Engagement Validation, curiosity, shared language

Formulation Exploring impact, psychoeducation, test results, exploring themes, reconceptualising experiences OZC rehab Consolidation 6+12 week programme Presentation, support Increasing independence in group, paper, exhibition cooking, travel, hobbies, support worker training.

Mood goal “For the confabulations not Learning to compensate to affect me emotionally” General diary, key question, “detective procedure” Engagement Validation, curiosity, Family & wider system shared language Assessment, goal-setting, formulation, management strategies, top-up training Formulation Exploring impact, psychoeducation, test results, exploring themes, reconceptualising experiences Outcomes

 X understands this difficulty and can discuss it with others  X’s family understand and have

good skills in supporting X to use Goal: For the confabulations not to strategy and maintain their affect me emotionally sense of agency  Dealing with setbacks  Increase when feeling unwell  Risk of not being heard Co-authored paper Systematic Review

• Searched five major databases plus grey literature from inception to July 2018 • Combined terms for: • Confabulation • Brain injury • Interventions • Otherwise broad inclusion criteria • Not associated with a degenerative condition • Adult patients only • Two researchers independently conducting each step

Fish & Simblett (in prep) Records identified through Additional records identified database searching through other sources (n = 357) (n = 16)

Records after duplicates removed (n = 372)

Records screened Records excluded (n = 372) (n=256)

Full-text articles assessed for eligibility (n = 116)

Fish & Simblett (in prep) Preliminary Results

• The majority of the 116 papers document cases with acute medical conditions • Most refer to confabulation only in passing • Many report resolution of confabulation following: • Treatment of underlying condition, e.g. thiamine in Korsakoff’s syndrome (n=25 studies), or limbic/anti- NMDAr encephalitis n=8) • No/unspecified interventions • Few focus on psychological/rehabilitation approaches

Fish & Simblett (in prep) Psychological/Rehabilitation Approaches: Rehab-as-usual

Mills et al. (2006)

• Nineteen people with cognitive deficits resulting from ACoAA ruptures, 13/19 confabulated • Given three months of goal-focussed outpatient rehab not focussed on confabulation • Results showed • Confabulation reduced • Proportionate decrease in need for supervision • 8/13 continued to confabulate No control group, etc Psychological/Rehabilitation Approaches: Developing awareness

Identify cues for confabs DeLuca and colleagues (1992, 1994) Family crucial Work on other deficits Three case reports documenting an Anticip- awareness-based approach (cf atory Crosson et al., 1989) Provoke and give feedback Emergent Encourage verification del Grosso Destreri et al (2002): Involve team and family further case using similar approach Mild confrontation Intellectual Verification All within 18 months of injury Family education

Establish working alliance Model-driven Interventions Trivino et al. (2017), PLoS ONE

• 20 people with clinically significant confab after ABI allocated to Tx/WL • Systematic contrasting of confabulations with reality • Encoding 12 pieces of information, testing free and cued recall plus source memory • Feedback for every trial plus instruction ‘think before you answer but remember that if you don’t remember, not answering is better than guessing’ • Reduction in confabulations on training paradigm from pre to post training in active group only • Similar improvement in staff/family-rated day-to-day confabulation • Proposed mechanisms: • Increased selective attention during learning • Enhanced monitoring during strategic search and inhibition of irrelevant traces • Improved memory control processes, e.g. verifying memories before making decisions ? Blinding, non-randomised, no active control etc

Larger trial completed earlier this year Herbert, Ramos & Sahar (2016)

MOTIVATIONAL SOURCE MONITORING STRATEGIC RETRIEVAL - Do not challenge - Do not challenge - Re-orient - Support sense of self - Redirect and distract - Errorless learning without attending to - Use memory book - Timeline confabulations - Provide consistent - Stop and think - Positive activity and environment - Relaxation participation Conclusions  The evidence base is currently insufficient to guide practice, but encouraging developments are afoot  For those with relatively stable presentations, and in the context of a therapeutic relationship, it is possible to increase clients’ awareness and understanding of confabulation  This may help reduce associated distress, and enhance the effectiveness of compensatory strategies  ‘Third wave’ and formulation-driven approaches may be usefully incorporated in neuropsychological rehabilitation programmes  Clinical presentation varies widely: likely need individualised interventions  Protocolised methods for provoking and correcting confabulations show promise Acknowledgements

 Joe and his family  OZC team especially Clare Keohane, Sue Brentnall, Jill Winegardner, James Pamment, Emily Grader  Sara Simblett  Camilla Herbert Contact: [email protected]

Thank you for listening!