Giving Voice to people affected by Parkinson s

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1 Welcome to the webinar: Giving Voice to people affected by Parkinson s Wednesday, 15 th June 2016 #Parkinsons #RCSLTwebinar

2 Chair of webinar: Derek Munn Director of Policy and Public Affairs, RCSLT Presenters: Nick Miller Professor of Motor Speech Disorders, Newcastle University Clare Worrall-Hill Professional Engagement Manager, Parkinson s UK

3 Welcome Derek Munn Director of Policy and Public Affairs, RCSLT

4 Housekeeping Send in chat messages at any time by using the Chat button Send in questions by using the Q&A button This event is being recorded. See here for recordings: Kaleigh Maietta is on hand to help!

5 Nick Miller Professor of Motor Speech Disorders, Newcastle University

6 Communication and swallowing changes associated with Parkinson s Nick Miller Institute for Ageing Speech language sciences University of Newcastle Newcastle NE1 7RU Nicholas.Miller@ncl.ac.uk

Directions for the talk Aimed at: People with Parkinson s, their families and friends Other health and social services colleagues who want to know about communication and swallowing changes Will look

7 Directions for the talk Aimed at: People with Parkinson s, their families and friends Other health and social services colleagues who want to know about communication and swallowing changes Will look at: How can Parkinson s affect communication? How can Parkinson s affect swallowing? Why is it important to recognise these changes? What are the main directions for intervention? Key overall messages to take away

8 How can Parkinson s affect communication VOICE phonation, vocal note LANGUAGE the words, content of the message INTONATION melody of speech FACIAL EXPRESSION and hand, arm gestures SPEECH articulation, pronunciation Parkinson s affects all aspects of communication

9 What will listeners notice? LANGUAGE the words, content of the message REDUCED EXPRESSION Face, hands, arms Miss meaning of what said, unclear expressing self. Change starts subtle, later more obvious Unsure of how person feeling or what their reactions are SPEECH articulation, pronunciation Slurred, words run together, sounds missed out 50-60% VOICE phonation, vocal note INTONATION melody of speech Speech sounds all on one level of loudness and pitch Quiet voice: speaker often not aware of whispering

10 Added all together this can affect: Getting into and staying in conversations employment social activities day to day situations Feelings about oneself as a communicator pleasure and effort of speaking risk of withdrawing from speaking

11 A little more about LANGUAGE CHANGES Sometimes I can t find the words It s a real problem to express my ideas I m always getting lost in conversations He doesn t understand jokes like he used to Sometimes I can t follow what she s trying to explain

12 These experiences are associated with more general changes found in Parkinson s: Difficulties with: Attention Problem solving Short term/working memory Speed of processing..

13 Why do these affect communication? Conversations require sustained attention, no distractibility Require problem solving, ordering information Need to spot the meaning : Much meaning only inferred, not explicitly stated, e.g. appreciating irony, humour, doubt, agreement Conversations involve attention switching Attending to one speaker then another; switch topic to topic Conversations require quick thinking, speaking Need to keep track of own thoughts Formulating answer, whilst find word, whilst compose sentence, etc Just when I nearly had the answer I forgot the question

Appreciating irony, humour, doubt, agreement A

Problems understanding or producing right

A lovely green HOUSE - GREENhouse Difficulty

concern means misunderstandings like Oh that s

14 Appreciating irony, humour, doubt, agreement A subtle language problem in Parkinson s: Problems understanding or producing right tone/ melody of voice gives problems such as mixing up: You are coming tomorrow? You are coming tomorrow! A lovely green HOUSE - GREENhouse Difficulty expressing or understanding sarcasm, humour, concern means misunderstandings like Oh that s a nice dress! Very funny! You ve arrived at last! Spotting the difference between literal and inferred meanings can lead to confusions He s a real fighter Getting the wrong end of the stick

15 Back to I can t seem to get into conversations How do all the changes affect that? To get into a conversation you must give listeners cues: Parkinson s can affect the efficiency of these cues lack of verbal cues e.g. because of voice initiation and loudness changes lack of non-verbal cues e.g. from reduced facial expression, arm gesture, body posture To stay in conversation listeners expect certain cues. Parkinson s may affect the cues that signal you want to hold your turn e.g. pauses become too long or in the wrong place, eye contact alters, facial expression is ambiguous Following rapidly switching speakers/ topics slows response Changed Theory of mind and social discourse Altered appreciation of others intentions

16 The message regarding how communication is affected? It s not just from the quieter voice (hypophonia) Understanding and producing the right tone and melody of voice is also affected (prosody impairment) Language and pragmatic/interaction factors too (cognitivelinguistic impairment) Not just speaking and formulating your own message Also understanding and perceiving what others say Quality of life impact: Social and psychological effects on life of speaker and family

17 What can be done about communication changes? Language Reduced face and arm gestures Speech AREAS OF INTERVENTION IN SPEECH- LANGUAGE THERAPY Intonation Voice

18 Speech language therapists prefer to introduce support early after diagnosis For education, awareness about how communication, voice, language work To prevent maladaptive strategies; to spot changes arising before they become a problem To support listener as well as speaker To forestall psychosocial risks

19 Support through structuring the environment Aim to optimise communicative environment To remove barriers to successful communication To boost support / understanding for how to best to communicate Advice and practice on managing conversations How to recognise breakdowns in understanding How to repair the breakdown

20 Direct work on voice and speech Attention to effort Recalibrating sense of effort Self monitoring effort Systematic, intensive, e.g. Lee Silverman Voice Treatment Speech rate control can also help Strategies and support for transfer and maintenance out of clinic after therapy stops are necessary Changing picture over time hence regular review

21 Effects of medication and surgery on speech? Medication: Speech and language controlled largely through nondopaminergic systems So medication that improves limb control has little effect on intelligibility Deep brain stimulation: Outcomes for speech vary according to precise placement of electrodes and dose size In general speech is either not improved and may even deteriorate LSVT alone for speech after DBS not as successful as for without DBS

22 What changes happen to swallowing in Parkinson s?

23 Why is swallowing important to consider in Parkinson s? Health status Nutrition/hydration Fatigue, confusion Sialorrhea Pneumonia Oral hygiene: a two way street Dysphagia a risk factor for poor oral hygiene Poor oral hygiene a risk factor for cardiorespiratory complications Social-psychological Food/mealtime enjoyment Impact on carers/ family Socialisation Depression Prognosis Early, rapidly deteriorating dysphagia suggestive of atypical Parkinson s Dysphagia a treatable factor in preventing/ minimising secondary complications

24 Maintaining a lip seal How is swallowing affected in Chewing; manipulating food Propelling food down throat Creating sufficient pressure Repeated swallows to clear Parkinson s? Slowed/weak peristalsis in pharynx Delayed, diminished or absent laryngeal protective reflexes Poor clearing/residue around entry to larynx Delayed triggering of pharyngeal reflex Reduced diameter, altered opening time of entry to food pipe. Impaired pushing food though pharynx and food pipe. Slow transit

How is swallowing affected in Maintaining a lip seal Susceptibility to sialorrhea/ drooling Chewing; manipulating food Creating

triggering of pharyngeal reflex Laryngeal penetration during swallow Parkinson s?

clearing/residue around entry to larynx Aspiration, penetration risk Reduced diameter, altered opening time of entry to food pipe.

25 How is swallowing affected in Maintaining a lip seal Susceptibility to sialorrhea/ drooling Chewing; manipulating food Creating swallowable bolus Propelling food down throat Creating sufficient pressure Repeated swallows to clear Threat to oral health Delayed triggering of pharyngeal reflex Laryngeal penetration during swallow Parkinson s? Slowed/weak peristalsis in pharynx Delayed, diminished or absent laryngeal protective reflexes Aspiration, penetration risk Poor clearing/residue around entry to larynx Aspiration, penetration risk Reduced diameter, altered opening time of entry to food pipe. Impaired pushing food though pharynx and food pipe. Slow transit Increased risk of spillage into larynx/windpipe Pooling around entry to larynx/windpipe, penetration to voice box and windpipe

26 Cerebral Cortex Decreased activation in areas controlling swallowing How is swallowing affected in Affects voluntary control of bolus formation and initiation of swallow Possible low awareness of difficulty Parkinson s? Pons, medulla: Interaction with cerebral cortex: Possible changes to sensation e.g. temperature, touch, pressure can affect swallowing Possible issues in allocating sufficient attention to chewing and swallowing Other brain changes in Parkinson s may affect role of visual, smell, taste perception in stimulating swallow and enjoying food Possible difficulties coordinating breathing-swallowing Some aspects improved by dopamine, others not

27 Cerebral Cortex Decreased activation in areas How is swallowing affected in controlling swallowing INEFFICIENT CHEWING Affects voluntary control of bolus formation and initiation of swallow Possible low awareness of difficulty Possible issues in allocating sufficient attention to chewing and swallowing Other brain changes in Parkinson s may affect role of visual, smell, taste perception EFFECTS ON ENJOYMENT OF FOOD Parkinson s? INCREASED RISK OF PENETRATION, ASPIRATION Pons, medulla: Interaction with cerebral cortex: Possible changes to sensation e.g. temperature, touch, pressure can affect swallowing Possible difficulties coordinating breathing-swallowing Some aspects improved by dopamine, others not

28 How is swallowing affected in Cortex Decreased activation in areas controlling swallowing Inefficient chewing Affects voluntary control of bolus formation and initiation of swallow Possible low awareness of difficulty Possible issues in allocating sufficient attention to chewing and swallowing Other brain changes in Parkinson s may affect role of visual, smell, taste perception Effects on enjoyment of food Parkinson s? Increased risk of penetration, aspiration Pons, medulla: Interaction with cerebral cortex: Possible changes to sensation e.g. temperature, touch, pressure can affect swallowing Possible difficulties coordinating breathing-swallowing SWALLOWING MECHANISM CHANGES FROM VERY EARLY ON - Compensation means maybe not obvious till later. - Therefore important to look for significant effects in behavioural change: increased cough on swallow; increased chest infections; alterations to diet or food preparation; malnutrition, weight loss, dehydration

29 Overview of intervention Bolus / diet modification Medical/surgical intervention: -Dopaminergic medication -DBS -rtms/tdcs Muscle strength training Electrical/ sensory stimulation Very few trialled specifically in Parkinson s, most studies come from stroke, head injury Van Hooren et al 2014 Parks Rel Dis 20(8), ; Langmore S et al (2015), Int J Speech-Language Pathology, 17(3), Airway protection manoeuvres and modified swallows Tube / enteral feeding

30 Positive; and with attention to meal time organisation Bolus / diet modification Strength of evidence for these Muscle strength training Expiratory strengthening = better airway protection Electrical/ sensory stimulation May help some. Role in motor learning/feedback different methods? Maybe as part of more general approach. Limited hard evidence Medical/surgical intervention: -Dopaminergic medication -DBS -rtms/tdcs TMS/DCS promising results Airway protection manoeuvres and modified swallows Dopamine may improve, especially if just before mealtimes DBS neutral to improves Tube / enteral feeding Later stages only when completely necessary

31 Messages to take away Communication changes in Parkinson s are more than just a quiet voice Language and prosody changes can have a subtle but major impact on understanding and expression Direct work to improve voice loudness and intelligibility works, but support must involve work with family/ friends too Hence importance of early referral to hinder/prevent problems arising Hence importance of regular review and changing support across the full time course of Parkinson s Hence work on transfer and maintenance of gains out of clinic equally vital Positive outcomes are always possible

32 Some important documents to look out for: Public consultation for NICE guidelines for Parkinson s from August Parkinson s National audit report detailing responses from 63 Speech lang-therapy services as well as elderly care, neurology, physiotherapy, occupational therapy services appearing shortly on Parkinson s UK website Parkinson s UK Excellence network Parkinson s UK: download handouts for professionals and people with Parkinson s on communication and swallowing changes

33 Clare Worrall-Hill Professional Engagement Manager, Parkinson s UK

34 The UK Parkinson s Excellence Network

About Parkinson s UK We are the Parkinson s research and support charity Better treatments and a cure - faster Research PD COMM trial: BCTU pd-trials@bham.ac.

35 About Parkinson s UK We are the Parkinson s research and support charity Better treatments and a cure - faster Research PD COMM trial: BCTU pd-trials@bham.ac.uk Empowerment to take control equipping people to live an active and fulfilling life from the point of diagnosis Quality services as standard bringing together health and social care professionals to transform care for people affected by Parkinson's

for change Build an expert workforce Equip professionals

36 UK Parkinson s Excellence Network The Excellence Network has been created to: Enable professionals to work together for change Build an expert workforce Equip professionals to influence services Strengthen the voice of people affected

uk/professionals/excellencenetwork-email-updates

37 Get involved Get the news sign up for the e-newsletter Be the news submit a blog! Get Tell the Excellence Network what you need!

Thematic Education; Evidence-based practice; Research Engagement; Service Development; Underserved Groups;

38 Excellence Network Regional and Thematic Working Groups Regional There is a Regional Group for every UK region. excellence@parkinsons.org.uk to be put in touch with your regional lead. Thematic Education; Evidence-based practice; Research Engagement; Service Development; Underserved Groups; Service-user Involvement; Technology Special Interest Exercise Professionals in Parkinson s Hub Medicines Management Standard Prescribing Data

41 Derek Munn Director of Policy and Public Affairs, RCSLT

42 RCSLT Parkinson s offer to members Clinical Excellence Networks (CENs) Clinical resources (on neurological conditions)

43 RCSLT Parkinson s offer to members Access to expert advisers RCSLT Bulletin magazine

44 RCSLT Parkinson s offer to members Commissioning manuals (dysphagia and voice relevant to Parkinson s) Research centre

45 RCSLT Parkinson s offer to members Highlighting #SLT during #ParkinsonsAwarenessWeek

46 Our general offer to members Resources on building business cases Resources on local influencing Giving Voice resources Influencing NICE guidelines, government strategy and legislation throughout the United Kingdom (including with partners)

47 Working with partners for better outcomes for people Work with neurological charities on commissioning Service user engagement The allied health sector Dysphagia symposium Inclusive communication and a symbol

48 Any Questions?

Speech and Language Therapy. Kerrie McCarthy Senior Speech and Language Therapist

Speech and Language Therapy. Kerrie McCarthy Senior Speech and Language Therapist Speech and Language Therapy Kerrie McCarthy Senior Speech and Language Therapist Contents 1. Voice disorders 2. Swallow disorders 3. Videofluroscopy 4. Adult Acquired Communication Disorders 5. How to