Parkinson Society of Southwestern Ontario hosted a webinar in mid-September 2020 on communication strategies for caregivers when speaking with people with Parkinson’s disease (PD). The speaker was Kerry King, speech-language pathologist at Connect Speech Therapy Center in Ontario, Canada. She discussed common caregiver concerns around communicating and PD, provided strategies for improving communication, and answered questions from the audience.

 Kerry began her lecture by introducing Parkinson’s disease and what symptoms relate to speech difficulties. PD is a progressive neurological movement disorder resulting from the decrease in production of dopamine. PD leads to a variety of motor and non-motor symptoms, and specifically issues relating to speech: inappropriate pauses, shaky/monotone voice, difficulty articulating speech, phonation (voice production), and reduced movement of the muscles for speech and swallowing. 

Kerry went on to address caregiver communication concerns and provided some tips for improving communication. For example, a common concern for caregivers is not being able to hear the person with PD or understand what they are saying. Kerry suggests turning down any other noise in the room, such as a television or a radio, making sure the lights are on in the room, and that the caregiver should maintain eye contact with the speaker to ensure clarity in conversation. 

The point about “not being able to hear the person with PD” came up again during the question-and-answer period. Kerry was asked:

What’s the greatest source of frustration for either the patient or the care partner around the communication? What’s the most commonly used treatment?

Her answer was: 

Source of frustration common for both sides: volume. PD person is not heard or has difficulty speaking up. Care partner has issues with repeating themselves or making sure they heard the PWP properly. In SLP therapy, we work on proper breath, what we call diaphragmatic breathing, which is deep breathing that can power the speech. If we can affect a change and improve the volume, we can add more power and precision to what the PWP is saying.

Kerry ended her lecture by sharing an acronym for caregivers to improve communication with people with Parkinson’s disease (PWP). She calls it “SPEECH for Frequent Care Partners”:

S – Spotlight your face – keep it visible. Use good visual cues. Keep a good distance. Face the speaker, etc.

P – Pause between content in sentences. Use “Clear speech” – don’t ramble on and on, slight pauses between phrases allow the PWP time to “catch up.”

E – Empathize and be patient. Try to keep your cool!

E – Ease their listening. Get the listener’s attention before speaking.

C – Control the circumstances. Try to make sure the environment is controlled. Reduce noise.

H – Have a plan. Try to anticipate difficulties and identify strategies that may work in advance.

The lecture was recorded and can be viewed here.

Stanford Parkinson’s Community Outreach has a lot of resources for PD caregivers here.

I listened to this lecture and am sharing a summary below. 

– August Besser

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“Communication Strategies for Parkinson’s Care Partners” – Webinar Notes

Speaker: Kerry King, Speech-Language Pathologist, Connect Speech Therapy Center, Ontario, Canada

Host: Parkinson Society of Southwestern Ontario

September 23, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

Introduction

• Parkinson’s is a slowly progressive neurological movement disorder caused by a degeneration of dopamine producing cells.
• Reduced perception
• Bradykinesia – slowness of movements. This can manifest as soft speech, small handwriting, reduced facial expression
• ·Hypokinetic dysarthria is reduced movement of the muscles of speech and swallowing.
• Researchers say about 89% of people will have speech and voice symptoms.
• Speech symptoms: quiet, irregular/slow/fast rate of speech, difficulty initiating speech, inappropriate pauses, shaky/monotone/breathy voice
• Respiration (breathing)
• Phonation (voice production)
• Articulation
• Other symptoms associated with PD: swallowing problems (dysphagia), unexplained weight loss, pooling, coughing/choking, drooling, pneumonia, voice changes, progressive difficulty with writing, cognitive changes, decreased facial expressions

Voice Handicap Index

• Functional: My family has difficulty hearing me when I call them. / I use the phone less often that I would like to. / My voice problem restricts my personal and social life.
• Physical: I run out of air when I talk. / The sound of my voice varies throughout the day. / I use a great deal of effort to speak. 
• Emotional: I am tense when talking to others. / I find that other people do not understand my voice problem. / I feel annoyed when people ask me to repeat.

Common Caregiver Concerns

• I have difficulty hearing / understanding my partner when he / she speaks. 
• My partner does not talk as much as in the past.
• He / she does not attend social functions as frequently as in the past. 
• He / she clears his / her throat more often.
• He / she suspects that I need a hearing aid.

Improving Communication: Some Tips

• Noise: turn down television or radio.
• Lighting: make sure the lights are turned on in the room.
• Maintain eye contact with the speaker.
• Distance: stand or sit close to the speaker to help you hear what is said.
• Writing: keep writing materials accessible at all times.
• Pointing systems: notebook, pictures, words, alphabet boards for daily needs.

Communication Strategies for Caregivers: Early Stages of Parkinson’s Disease

1. Gain attention and eye-contact before speaking. Establish context!
   • Call name first, be in the same space/room. 
   • Avoid speaking at length if in separate rooms or while driving
   • Tip: we listen best with our ears AND eyes!
2.  Ask questions by giving PWP specific choices.
   • Ex: “Would you like chicken, fish, or hotdogs?”
   • Avoid open-ended questions, such as “What do you want to eat?”
3. Reduce background noise when speaking.
   • Turn off all radios, televisions, and noisy appliances
4. Give PWP (person with Parkinson’s) sufficient time to speak and respond to your questions.
5. Be an active listener. Look for hints from eye-gaze and gestures.
6. Be honest if you do not understand the message. Confirm when understand.
   • Signal (thumbs up/down). Nod. Fun code word. “Uhuh…Ok…got it”
7. Maintain a normal level of voice volume. Resist the urge to shout.
8. Provide emotional support.
9. Use specific feedback.
   • For example, repeat the part of the message that is understood. Pause and allow the PWP to repeat/clarify the part that you are unsure about.
   • Ex. “Patty and Carlos are coming over on Monday for…?”
10. Ignore errors if you understand the message.
11. Use/encourage short, simple sentences
    • Ex. “S.O.S.”: Slow, One Word/Over-articulate/Open Mouth. Say each sound.
    • Identify more difficult times of day, medication “off times”, etc.
12. Encourage the PWP. 
    • Ex. “I know you feel frustrated speaking. Let’s come back to this”, etc.

Communication Strategies for Caregivers: Late Stages of Parkinson’s Disease

In addition to the above, need to:

1. Ask “yes” or “no” questions rather than leaving the questions open-ended. 
   • Ex. “Do you want juice?” as opposed to “Do you want juice, coffee, or tea?”
2. Be open to new methods of communication
   • Ex. Establish simple signals or gestures to convey a message.
   • Communication board/book (pictures, photos for pointing)
3. Be respectful of your loved one and encourage their efforts.
   • Ex. Plan ahead to have extra time for conversations. Extra patience.
   • Empathize. Remember – it is frustrating for them as well!

SPEECH for Frequent Communication Partners

S – Spotlight your face – keep it visible. Use good visual cues. Keep a good distance. Face the speaker, etc.

P – Pause between content in sentences. Use “Clear speech” – don’t ramble on and on, slight pauses between phrases allow the PWP time to “catch up.”

E – Empathize and be patient. Try to keep your cool!

E – Ease their listening. Get the listener’s attention before speaking.

C – Control the circumstances. Try to make sure the environment is controlled. Reduce noise.

H – Have a plan. Try to anticipate difficulties and identify strategies that may work in advance.

Question and Answer

Q. What’s the greatest source of frustration for either the patient or the care partner around the communication? What’s the most commonly used treatment?
A. Source of frustration common for both sides: volume. PD person is not heard or has difficulty speaking up. Care partner has issues with repeating themselves or making sure they heard the PWP properly. In SLP therapy, we work on proper breath, what we call diaphragmatic breathing, which is deep breathing that can power the speech. If we can affect a change and improve the volume, we can add more power and precision to what the PWP is saying.

Q. Are there any apps I can download to help out my partner?
A. There’s one that I know that’s called “Loud and Clear.” It can be helpful to record yourself and listen to how you speak, like when you read or record a dinnertime conversation. And listen after the fact, because the PWP needs to hear themselves to understand that they couldn’t be heard easily then. In therapy, we encourage people to “think loud,” so that they can speak louder after that. Most voice recording apps can be helpful in this manner.

Q. “I’ve heard that whispering is something I shouldn’t do. Do you agree?”
A. I would agree to that. Not having met this person or understanding his particular issue, I would encourage him to not whisper. Whispering can actually hurt your vocal cords, which seems counterintuitive. Your vocal cords are straining to not vibrate, which is opposite from how regular speech works, and that can be damaging for the long term.

Q. What is the “Loud and Clear” program?
A. 8-week training group for PWP. Pre-COVID was in-person, now it’s virtual. It is training and education, not therapy, around your voice and how to produce your voice. We work with speech language pathologists to make sure you know how to speak louder and clearer in daily conversations, like phrases and sentences, and your articulation in pronouncing words. The Parkinson Society of Southwestern Ontario also runs a group like this. A normal situation we practice is going to a noisy airport and working on asking questions above that noise.