Adult Degenerative Conditions and TBI The case for SLT provision

What is TBI? “Brain injury is not an event or an outcome. It is the start of a […] misunderstood, under-funded neurological disease.” (Brain Injury Association of America, 2015)

“foremost cause of death and disability in young people […] a healthcare problem which is not going to go away” (Commons Select Committee on Health, 2001)

TBI - facts Incidence: 175 per 100,000 people p.a. (Department of Health, 2005) Prevalence: 420,000 (Department of Health, 2005) The most common brain damage in people under 40 (Kolb & Whishaw, 2011) More common in men than women, although the proportions are changing (Headway, 2015) At least 2000 adults a year suffer serious, permanent impairments (Commons Select Committee on Health, 2001) Cost to UK economy: €5 billion annually (Fineberg et al., 2013)

What are degenerative diseases? Diseases causing deterioration over time The three most common degenerative diseases are: Alzheimer’s disease Parkinson’s disease Motor neurone disease There are many others, including other types of dementia and multiple sclerosis

Incidence & Prevalence 10 million people in the UK have a progressive neurological disorder at any time (RCSLT, 2006)

Dementia - facts Incidence: 163,000-180,000 in the UK Prevalence: 850,000 in the UK (1/79 of the UK population) Alzheimer’s Disease affects women: men 2:1 Life expectancy: >10 years post-diagnosis Cost to UK economy: £26 billion p.a. at current prevalence (Alzheimer’s Society, 2014)

Parkinson’s Disease - facts Incidence: 17 per 100,000 Prevalence: 1/500 people Cost to UK economy: £2 billion p.a. – costs increase as the disease progresses (Parkinson’s UK, n.d.)

MND - facts Incidence: 6 people are diagnosed every day in the UK; lifetime risk 1/300 Prevalence: 5,000 in the UK Life expectancy: 2-3 years post-diagnosis ~35% experience mild cognitive change 15% develop signs of frontotemporal dementia Cost to UK economy: £1.1 billion p.a. (MND Association, 2017)

Impact of TBI on communication May cause aphasia and/or dysarthria (RCSLT, 2010) Social communication difficulties are very common, affecting relationships, education and employment (Dahlberg et al 2007) May affect frontal lobe function – executive function, memory and attention - and cause impulsivity, reduced cognitive function, lack of insight etc. (McDonald, Togher, & Code, 2004) May affect mental capacity, or its assessment

Impact of degenerative disease on communication Communication difficulties in degenerative disorders can lead to difficulties with social isolation, employment and education (Enderby & Emerson, 1995) Dementia can cause memory loss, word-finding difficulties, use of inappropriate language, personality changes, loss of empathy, apparent selfishness (www.icommunicatetherapy.com) Degenerative dysarthria can lead to speech being completely non-functional (Yorkston, 2007) These disorders can lead to frustration, anxiety and depression for the person with the disease and their carers (RCSLT, 2013-resource manual for commissioning dementia)

Benefit of SLT in TBI In the acute stages: swallowing assessments and guidance; teaching family members how to interact; advising other healthcare staff on communication (Hemsley & Balandin, 2014) In rehabilitation: working on communication: aphasia, dysarthria, use of AAC; working on cognition: attention; orienting the person to time and place, and what has happened to them Later in recovery: working on memory & problem-solving strategies; social skills work; self-monitoring and insight; MDT collaboration for return to education or employment SLTs will be involved long-term. Individuals can require intermittent intervention and their needs can change over time (Olver 1996)

Benefit of SLT in degenerative disease Intervention addresses current problems and anticipates future difficulties (RCSLT, 2006) Early and/or differential diagnosis Provision of AAC Maximising communicative function in the areas of life that are seen as a priority by the patient and family

Benefit of SLT for family/carers Sim, Power, & Togher (2013) Communication training programme for individuals with TBI and their communication partners (CPs) 10 weeks of therapy for 3.5 hours – group and individual sessions Post-therapy carers used fewer test questions, more negation during communication breakdowns and more tracking of the information that the person with TBI had communicated (e.g. asking for clarifications)

Benefit of SLT for family/carers Spilkin & Deborah Bethlehem (2003) Training of CP of 85-year-old with Alzheimer’s. Trained in the use of a memory book, rules of conversation, the nature of the carer and client’s interactions and techniques the carer could use. Pre- and post-10 minute recorded conversations were compared After therapy client used more topic initiation, longer topic maintenance and more self-repair. CP also used more silences interrupted less and more closed and open questions to facilitate conversation. Carer stated that post intervention, client “spoke more sense” and reported that she enjoyed hearing what he had to say.

Importance of SLT - overall Facilitation of access to other healthcare professionals Contribution to multidisciplinary problem solving and care planning Education for clients and carers about communication difficulties specific to the condition Advice to promote self-esteem and increase communicative quality Specific programmes to maximise and maintain function (Enderby et al., 2013) Assessment and guidance regarding eating, drinking and swallowing Advocacy for people with communication disorders

Consequences of not providing SLT Decrease in quality of life, sense of personhood and quality of relationships with all involved Barriers to accessing and communicating with other professionals Social isolation and reduced independence from earlier in disease course

Consequences of not providing SLT Avoidable pneumonia and death due to malnutrition, choking and aspiration Unnecessary, expensive (re)admissions to hospital/residential/nursing care Needs of vulnerable adults not met Incorrect assessment of mental capacity

Any questions?

References 1 (https://www.alzheimers.org.uk/info/20025/policy_and_influencing/251/dementia_uk) Beukelman, D.R. & Mirenda, P. (1998 2nd Edition). Augmentative and Alternative Communication: Management of Severe Communication Disorders in Children and Adults. Baltimore, MD: Paul H. Brookes Publishing Co BIAA. (2015). BIAUSA Homepage. Retrieved from biausa.org: http://www.biausa.org/index.htm Blackburn, D., & Reuber, M. (2015). Using conversation analysis to diagnose dementia [Electronic version]. Neurology, 84(14), Supplement P5.014 Bronwyn Hemsley & Susan Balandin (2014) A Metasynthesis of Patient Provider Communication in Hospital for Patients with Severe Communication Disabilities: Informing New Translational Research, Augmentative and Alternative Communication, 30:4, 329-343 Commons Select Committee on Health. (2001, April 3). Third Report: Head Injury: Rehabilitation [Electronic version]. Retrieved from Parliament.uk: http://www.publications.parliament.uk/pa/cm200001/cmselect/cmhealth/307/30703.htm

References 2 Dahlberg, C., Cusick, C., Hawley, L., Newman, J., Morey, C., Harrison-Felix, C., & Whiteneck, G. (2007). Treatment efficacy of social communication skills training after traumatic brain injury: a randomized treatment and deferred treatment controlled trial. Archives of Physical Medicine & Rehabilitation, 88(12), 1561-1573. DH Long-term Conditions NSF Team. (2005). The National Service Framework for Long-term Conditions. Retrieved from www.gov.uk: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/198114/National_Service_Frame work_for_Long_Term_Conditions.pdf Fineberg, N.A. et al (2013). The Size, Burden and Cost of Disorders of the Brain in the UK. Journal of Psychopharmacology,27, 761-770. Headway. (n.d.). What happens in a TBI? Retrieved from Headway: The Brain Injury Association: https://www.headway.org.uk/about-brain-injury/individuals/types-of-brain-injury/traumatic-brain-injury/what- happens-in-a-tbi/ Hemsley, B., & Balandin, S. (2014). A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: informing new translational research [Electronic version]. Augmentative and Alternative Communication, 30(4), 329-343. Humphreys, J., Wood, R. L., Phillips, C. J., & Macey, S. (2013). The costs of traumatic brain injury: a literature review [Electronic version]. ClinicoEconomics and Outcomes Research(5), 281-287.

References 3 Kolb, B., & Whishaw, I. Q. (2011). An Introduction to Brain and Behaviour (Third (International) ed.). New York, NY: Worth Publishers. McDonald, S., Togher, L., & Code, C. (Eds.). (2004). Communication Disorders Following Traumatic Brain Injury. Hove: Psychology Press Ltd. https://www.mndassociation.org/what-is-mnd/brief-guide-to-mnd/ Olver, J. H., Ponsford, J. L., & Curran, C. A. (1996). Outcome following traumatic brain injury: a comparison between 2 and 5 years after injury [Electronic version]. Brain Injury, 10(11), 841-848. RCSLT. (2010). Resource Manual for Commissioning and Planning Services for SLCN: Brain Injury. Retrieved from Royal College of Speech and Language Therapists: https://www.rcslt.org/speech_and_language_therapy/commissioning/brain_injury_intro Sim, P., Power, E. & Togher, L. (2013). Describing conversations between individuals with traumatic brain injury (TBI) and communication partners following communication partner training: Using exchange structure analysis. Brain Injury 27(6), 717–742. Spilkin, M. & Bethlehem, D. (2003). A Conversation Analysis approach to facilitating communication with memory books. Advances in Speech Language Pathology, 5(2), 105-118,