Back in December of 2018 the Parkinson’s Foundation hosted a caregiver summit in Phoenix, AZ.  I was beyond impressed with the information provided by Dr. Angela Roberts, PhD in her talk on Building Stronger Caregiving Partnerships Through Better Communication.

I highly recommend watching Dr. Robert’s presentation here.  Her talk makes way more sense than reading my notes, but here are some of the highlights.

Dr. Roberts presented information learned in the prior few years about communication in general, and with people with Parkinson’s (PwP), in particular.  Not surprising, but good to keep in mind, is that researchers found communication breakdown increases caregiver burden because it makes everyday activities more challenging and leads to social isolation and loss of relationships, thereby negatively impacting quality of life for both the person with Parkinson’s (PwP) and their care partner.

Most striking to me was learning that that 66% of breakdowns in communication between PwP and others are UNRELATED TO SPEECH CLARITY AND VOICE LOUDNESS ISSUES.

In addition to miscommunicating the main points when speaking, PwP tend to have: 

• Abnormally long pauses that create confusion in conversation turn-taking
• Unclear topic or topic not consistent with the current context
• Unclear non-verbal signals for turn taking
• Slowed processing of information.  In conversation, sentences are coming so fast, the PwP can’t process quickly enough to keep up.
• Delays in initiating speaking turn or in responding to partner* Use of incorrect or ambiguous words that cause confusion for conversation partners

Dr. Roberts shared that people have a natural tendency to repair communication breakdowns.  Sadly, Parkinson’s care partners are more likely to abandon these efforts before the breakdown is resolved about 1/3 of the time (60% of the time in cases of PD with dementia).  This is likely because communication repair with a PwP takes multiple attempts.  It is actually more complex to communicate with a PwP than with someone who has Alzheimer’s, leading to more misunderstandings.  Overcoming miscommunications with a PwP can be learned but it takes practice, practice, practice!

NOTE: More than any other type of care partner, care partners in Parkinson’s disease tend to talk over or interrupt the PwP’s speech, particularly when the PwP’s speech volume fades or they pause in their speaking.  This furthers communication breakdown.

Instead, here’s what to do to Repair Conversations:

• Monitor for signals of difficulty
• Verify with the PwP that you understood the message
• Direct request for help by saying – I don’t think I understood you correctly – Please repeat that again – Did you mean to say…
• Repeat and simplify if needed (Repeat using exactly the same words.  Don’t expand or explain.  Give them longer than you would expect to process what you’ve said.)
• Rephrase with added information if repeating doesn’t work
• Use gestures or show what you mean* Stay calm.  Avoid being critical.

For more information about speech and swallowing issues in Parkinson’s disease, check out this page on our website including this webinar!

– Denise

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Parkinson’s Foundation Caregiver Summit

December 1, 2018

Building Stronger Caregiving Partnerships Through Better Communication

Presenter: Angela Roberts, PhD, SLP

“By the time I put together what I want to say the conversation moved on, so I just choose to sit quietly and not engage as much.  – J.V., 2009

“I just can’t follow what he is saying.  It’s there but something is missing.  The words and the way he communicates just isn’t him.  Conversations don’t flow the same.  I feel…alone.”  – Caregiver, 2010

“It wasn’t my speech or movement, but I would be in front of the class not able to find my words like ‘allomer’ that I have used for years teaching.”  – M.L., 2013

Information

• 2-way communication (even bird song has syntax and other animals communicate)
• Facilitates Relationships, Critical to Establishing Identity & Sense of Self – those relationships erode when communication breaks down, increasing the burden of care.

Conversations

• Part of what make us human
• Interaction between at least two people
  • Successes and failures lie at the intersection between people.  
  • Nobody’s fault but repairing the faults in communication requires the cooperation between both parties.  
  • Repairing communication doesn’t happen fast but this talk will provide tips.  
  • Practice!  The payoff is worth it!   *** Critical information to this lecture ***

• Governed by a set of rules
  • Universal across languages
  • Learned simplicity over our lifetimes

• When impaired…
  • Negatively impacts quality of life (QoL)
    • For both person with speech impairment and care partners
  • Increase sense of burden
  • Contributes to placement into long term care
  • Makes everyday activities more challenging
  • Lead to social isolation and loss of relationships

If you want to go fast, go alone.If you want to go far, to together.  – African proverb

Time Together Today:

• How conversations work
• Background on why conversations break down in PD
• Raise awareness to the mutual responsibilities of conversation partners in good communication
• Strategies you and your partner with PD can use to enhance conversations at home

Cartoon:  Man says to a woman, “Honey, when you say we can’t communicate…what exactly do you mean?”
The speaker, Dr. Robert’s husband has hearing loss, so communication breakdown happens in her home frequently.

Successful Communication In Any Language or Culture Involves:

• Clear body language, eye contact and gestures
• A clear topic
• Clear words
• Attentive listeners
• Speakers following turn-taking rules

If any of these elements is not working well, you have Conversation Breakdown.

Communication in Real-Life Contexts in PD is the basis of speaker’s research.They record communications and identify what, when, why, how of communication breakdowns.Then, they try to identify the reasons and how to overcome them.

Multiple Sources of Conversation Breakdowns

• Unclear speech / Quiet voice
• Hearing difficulties
• Word errors and slips of the tongue (saying things they don’t mean to say)
• Sentences that are unclear or ambiguous
• Changing topics quickly
• Internal states ; pain, distraction, impatience
• Unclear gestures or non-verbal signals and facial masking
• Rushing / being in a hurry
• Noisy environments
• Memory problems and language problems
• Poor attention
• Emotional burden and relationship difficulties
• Starting in the middle of an idea / thought

Communication Research:– Understanding complex sentences (e.g., Grossman, 2001)- Understanding action language (Garcia et.al., 2018; Roberts et.al., 2017)- Fewer grammatically correct sentences (Gutierrez et.al., 2017)- Produce more filled pauses and revisions (Gutierrez et.al., 2018)- Produce less information and omit meaningful main elements of the stories (Roberts & Post, 2018)@angela.roberts@northwestern.edu

Causes of Conversation Breakdowns in PD Dyads

66% OF BREAKDOWNS ARE UNRELATED TO SPEECH CLARITY AND VOICE LOUDNESS ISSUES(Roberts et.al., in prep; Griffiths, 2014, Branson et.al., in prep; Rinne et.al., in prep)

It’s not that people can’t process long, complex sentences, but that the processing speed is slowed due to Parkinson’s.  In conversation, the sentences are coming so quickly the person with Parkinson’s can’t process quickly enough to keep up.

The person with Parkinson’s also tends to miss communicating the main points when speaking.  

• Abnormally long pauses that create confusion in conversation turn-taking
• Unclear topic or topic not consistent with the current context
• Unclear non-verbal signals for turn taking
• Slowed processing of information
• Delays in initiating speaking turn or in responding to partner
• Use of incorrect or ambiguous words that cause confusion for conversation partners
• Talking over / interrupting the person with PD
  • Care partners in Parkinson’s disease tend to talk over the person with Parkinson’s (PwP) speech, particularly when the PwP’s speech volume fades or they pause in their speaking.  This is a breakdown in communication for several reasons.

Hearing loss and Cognition

• Common in aging, but more common in PD (Pisani et.al, 2015; Vitale et.al., 2012; Vitale et.al, 2016)
• More cognitive resources required for listening and hearing less available for other functions / tasks.
• Increases the frequency of conversation breakdowns in PD by more than a third (Griffiths, 2015).  More so than in Alzheimer’s.

There are as many care partners with hearing loss as there are PwP.  Hearing loss can be unidentified.  Have both people’s (PwP & care partner) hearing tested and corrected as well as possible.

Conversation Repair Cycles

• Universal Rule:  When a communication breakdown occurs, speakers attempt to repair it.  
• This does not happen when someone has PD!  This talk is about the why and how.

Signal of difficulty / misunderstanding typically signals repair attempt.

Conversation Repair Cycles in PD Dyads

• More missed opportunities for repair
  • Care Partner is less sensitive to signals of breakdown
  • Person with PD is more likely to initiate the repair whether they or their partner is the source of the breakdown

Care partners are more likely to abandon repairs (not attempt or abandon before resolved)

More than a third of breakdowns go unresolved.  In cases of PD with dementia 60% go unresolved.

• Repairs take multiple attempts (complex repairs)
  • More complex repairs than communicating with someone who has Alzheimer’s dementia
  • Less likely to be successful
  • Leads to more misunderstandings

(Roberts et.al., in prep; Griffith, 2014; Branson et.al., in prep; Rinne et.al, in prep)

Goal: Reduce conversation breakdowns

Goal: Increase the effectiveness and efficiency of repair cycles.  

• This work has been done more in stroke victims.  
• It took 7 years to develop this intervention.

Communication Enhancement Strategy Training (Roberts, 2017)

• Goals:
  • Reduce frequency and severity of conversation breakdowns
  • Optimize strength / Reveal competence of each partner
  • Re-balance the conversation burden between partners
  • Optimize effective strategies, reduce the use of unhelpful and harmful strategies

• Treatment:
  • Person with PD and their conversation partner
  • Learn personalized and systematic conversation strategies over 8-weeks
  • Learn to identify signals of conversation difficulty and repairs

• Communication when PD is a factor is a balance of:  Expectations and Abilities & Motivations
  • Mutuality-Centered
  • Speech / Language-Centered
  • Person-Centered

Goal: Reduce conversation breakdowns
Being attuned to self, partner, environment – takes practice, practice, practice!!!Mutuality-Centered

• Temporal / Time:
  • Choose optimal times of day
  • Medication times
  • Fatigue
  • When parties are paying attention (not facing away, etc.)

• Emotional:
  • Check-in on your own emotions
    • Monitor your partners’ emotions / withdrawing (facial expression, body language)
    • Monitor signals of difficulty and adjust the conversation (pace, repair strategy)

• Cognitive Status / Intent:
  • Conversation is for communicating, not testing
  • Assess motivations that are driving the conversation
  • Message does not have to be perfect in order to foster meaningful connections

• Speech / Language-Centered
  • Message / words are clear
  • Body language, eye contact, gestures are clear
  • Topic / context is clear

Speech and Voice Exercises
Early, targeted, and intensive voice training may potentially slow progression of voice impairments (Russell et.al., 2010; Ciucci et.al., 2015)Intensive loudness training can change brain activity and muscle movement toward more normal patterns for voice / speech. (Liotti et.al., 2003; Narayana et.al., 2009; Stathopoulos & Sapienza, 1997; Stathopoulos et.al., 2014)

• Lee Silverman Voice Treatment (LSVT LOUD)
  • Most researched program for voice treatment in PD
  • High intensity voice exercise program – voice loudness
  • Optimizes motor learning theories
    • Highly structured
    • Highly repetitive
    • Maximum effort
    • 4 days (50 minute sessions)/week 4 weeks (16 sessions)
    • Re-trains individuals in producing their maximum effort during speech
    • ‘Think’ and ‘Be’ loud  (e.g., Sapir et.al., 2011)

• SpeechVive – Preserves the natural tendency to talk over the volume of background noise
  • Facilitates improvements in respiratory and speech muscles. – Device optimizes automatic reflex to increase voice loudness in noisy environments.
  • Practice occurs within everyday communication contexts. – Wear at home during normal communication activities. Settings adjusted based on client needs by SLP.
  • In some individuals it may reduce cognitive effort required to maintain voice loudness. – Increase loudness, automatic vs. focused effort.

• Voice Amplifiers
  • Recommended for PD:
    • ChatterVox
    • FM Systems
    • Spokeman
    • Voicette
  • Not recommended for PD:
    • ADvox
    • SoniVox

Turning up the volume may not be enough…

Minimize Environment Distractions

• Turn of televisions, radios, running water and other sources of noise (visual and auditory)
• Reduce barriers by communicating face-to-face (3-6 feet apart)
• Resist talking between rooms
• Resist talking while walking away
• Provide alerting cues (touch them to get their attention)

Provide Additional Time

• Provide time to process information (1/3 longer than the average person)
• Present information in smaller ‘chunks’
• Listen patiently
• Provide additional time to formulate responses
• Avoid rushing or having important conversations during hurried moments

Topic Management

• Maintain topic until it is finished (don’t bounce from topic to topic during a conversation)
  • If necessary to change topics, alert your partner
  • Return to the original topic when finished
• Avoid changing topics quickly
• Create context before introducing a new topic

Language Complexity (cases of more advanced disease and/or cognitive impairment)

• Reduce complexity of sentences
  • One idea per sentence
  • Put the main idea first
  • Reduce use of complex sentence structures and longer sentences
• Consider using familiar vs. less-familiar words
• Offer response choices or ask yes / no questions to help make responding easier

Conversation Repair Cycles
Signal of difficulty / misunderstanding leads to Repair

Repairing Conversations:  What to DO

• Monitor for signals of difficulty
• Verify that you understood the message
• Direct request for help
  • “I don’t think I understood you correctly.”
  • “Please repeat that again.”
  • “Did you mean to say …”
• Repeat and simplify if needed 
  • (Repeat using exactly the same words.  Don’t expand or explain.  Give them an opportunity to hear you and process what you’ve said.)
• Rephrase with added information if repeating doesn’t work
• Use gestures or show what you mean
• Stay calm.  Avoid being critical.

Repairing Conversations:  What NOT to do

• Raise your voice
• Provide non-specific clarifying prompts, like:
  • What?, Huh?, Eh?
• Excessively reduce speech rate
• Demonstrate impatience
• Give-up or abandon the chance to clarify, if necessary
  • Come back to the topic when everyone is settled, and the time is optimal
    • Ensure a quiet environment, are meds active, are all parties rested, hydrated, fed, etc.

Person-Centered 

• Negotiating Preferences (How PwP would like your help communicating effectively)
  • Request permission to speak for or fill in information for PwP
  • Discuss openly the type of help you both need and the way you want to receive it
  • Decide jointly what to share with others

Facilitating Participation

• Create room / time to process in the conversation for the PwP to be able to participate 
• Arrange for smaller groups in less distracting environments
• Initiate topics of high interest to the PwP (cars, fishing, travel, politics, current news/events, special occasions, etc.)
• Be a ‘ramp’ for helping the person with PD get into conversations.  Draw the PwP in, give them an opportunity to speak.

Acknowledging & Revealing Competence

• Acknowledge conversation difficulties
• Acknowledge successes in getting messages across
• Acknowledge your partner’s expertise and perspective

Validating

• Validate the feelings of your conversation partner when failures occur
• Take responsibility for failures.  Don’t blame.

* Conversations are the responsibility of both partners.  * Solution does not lie solely with ‘fixing’ the person with PD.  Work on these communication tips together.* Good conversation skills can be developed with practice* Meaningful and effective conversation require flexibility, empathy, and the ability to adjust over time* The payoff in preserving sense of self, emotional connections, and reducing burden of daily activities is worth it.

New and expanded Speech, Communication, and Swallowing Booklet from the Parkinson’s Foundation 

Parkinson Education Program (PEP) for Community Caregivers is an on-line education program for advanced PD offered by the Parkinson Society of Southwestern Ontario.  It has a unit on communication.  Register for free here.

Research: we need your help!

December 2018 Dr. Roberts was recruiting individuals with Parkinson’s disease and adults without Parkinson’s disease for studies into:* Understanding language processing differences in PD using eye tracking* Understanding brain differences associated with speech changes in PD* Wearable devices for remote monitoring cognitive and social interaction changes in PD* Speech monitoring, error detection and their influence on everyday communication problems in PD* Conversation Enhancement Training – Clinical Trial

Contact the Language and Communication in Aging and Neurodegeneration Research GroupNorthwestern University School of Communication Roselyn and Richard Pepper Department of Communication Sciences and Disorders.  Phone: 847-467-4262, LCAN@northwestern.edu, https://lcanresearch.soc.northwestern.edu/

Q&A

Q. Do conversation breakdowns with PwP happen in regular episodes or are they sporadic?A. The nature of conversation breakdowns is common enough to be regular in that they will occur every day, but there may be spikes in difficulty due to fatigue, medication on/off times, stress, etc.

Q. Wife with advanced PD.  When talking to her face to face she doesn’t respond until I say her name, then she responds, and we communicate.

A. It is frustrating because she doesn’t tune in quickly.  It may be a hearing issue but could be cognitive or attentive.  If you know she responds better once she hears her name, start with that.  You can also say unimportant things until you see her tune in.  “Hey Judy, I need to talk with you about…”

Q. The focus in this talk is on the PwP, but what to do with an unruly family member who doesn’t know or care about how they communicate with the PwP and care partner?

A. The nature of speaker’s research is to focus on the dyad.  That is anyone talking to the PwP.  This can even reach as far as ‘elder speak’ which is elder abuse.  During treatment we bring in more than just the care partner, like children, caregivers, etc.  People just don’t know how to do it ‘right’ and may not have the confidence to apply strategies once they are exposed to the tips.  It takes time and several educational sessions.  You can point out how the PwP responds when the unlearned speaker tries to communicate with the PwP.  There can be a lot of emotional baggage as to why people don’t care.  You may need professional help to overcome this behavior pattern.  The person misbehaving must have the motivation to change their behavior.  Clinicians may be able to bring them to find the motivation to change their behavior.

Q. What strategies can I use to bring out my PwP’s thinking when I can’t tell if they understand me?

A. Facial masking prevents us from knowing their thinking.  Parkinson’s prevents them from being able to read your nonverbal cues.  You must give them time to process and to speak.  You must ask what you can no longer read on their face.  Break your information into small pieces and ask their thinking on each piece of information.

Q. My partner’s speech is becoming unintelligible. Sign language, communication tools?  When?

A. This is a signal problem.  Accessibility to interventions differs.  Access to high quality interventions in PD is problematic.Traditional behavioral interventions, like LSVT works well, especially early in PD.  Seek treatment at the first sign of difficulty!!! Don’t wait until there are bigger problems.  SpeechVive device is new and a bit expensive but doesn’t require intensive practice and a clinic.  It also doesn’t focus on increased effort but is more automatic.  There are communication tools.Sign language is harder because the same problems exist as in hearing communication.  Movement of the limbs and learning the motions are challenging for those with PD, so that probably isn’t a good solution.