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8th October 2023

Transformative tools, tips, and tricks for the care partner journey

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By Tina Gillespie, YOP-X Content Manager

The most impactful session at the World Parkinson’s Congress for me was Communication: it’s more than just voice by Associate Professor Angela Roberts from University of Western Ontario.

A/Prof Roberts spoke about the mechanics of conversation and the two types of communication we experience every day: transactional communication (those conversations that focus on getting tasks
done, transmitting information, getting through activities of daily life) versus interactional communication (those conversations focus on connecting and being with each other).

We know that Parkinson’s can affect communication in several ways. This includes changes to the person with Parkinson’s (PwPs) cognitive abilities, motor speech and language systems.

It is a frustration for both the PwP and those interacting with them. In real terms it looks like this:

The PwP’s processing time for information uptake increases, responses often have long pauses to find words, and you are getting unclear non-verbal signals due to Parkinson’s masked face. This creates confusion in everyday conversation and results in ambiguous queues for turn-taking when speaking.

This often leads to the people without Parkinson’s interrupting, filling in the gaps, finishing sentences for PwP as they try to “help”. These result in frustrations on both sides and lead to a communication style that becomes more and more transactional.

These communication challenges are a significant driver of lower quality of life in PwPs due to decreased participation in conversations, social withdrawal, and in turn, leads to increased risks for social isolation and stigmatisation.

Take a moment to reflect on the conversations you have had with your person with Parkinson’s over the last week. Now think about conversations you’ve had with close friends or family and try to classify which type of communication most of those conversations fall into.

So, what can we do to alleviate some of the frustrations on both sides of the conversation?

Key strategies for communicating with the person with Parkinson’s (PwP) are active listening, striking the balance between transactional and interactional conversations; and using humour and empathy.

Have the discussion about what you can do to support your PwP with their communication needs. Do they want you to invite others to hold the space for them during pauses in conversation when out socially? Would they be more comfortable in public if you did or didn’t help them find their words? Does the PwP want to have their manager mention their communication needs at the
start of meetings?

Take aways from this were:

  • Firstly, remember that conversation is more than just message exchange and recognise that there is value in connecting even if the message isn’t correct.
  • Secondly, consider the perspectives, emotions, and expertise of both people in the conversation.
  • Finally, create an emotional connection using verbal and non-verbal language by making eye contact, getting close and using touch.
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