3 Communication and cognitive issues

3.1 Introduction

Having worked through the course up to the end of Section 2 [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] , you should now have a general understanding of the motor and non-motor symptoms in Parkinson’s. You should also understand the impact that these symptoms can have on the quality of life of a person with Parkinson’s and how you can help them manage these symptoms. In this section we will look in detail at communication and cognitive problems, as these can have a significant impact on a person with Parkinson’s and those who care for them. You can consider your role and that of other professionals in managing these problems.

In this section we will look at the following questions:

  • What communication problems are caused by Parkinson’s?
  • What is the impact of these problems and what assumptions could be made about people with communication difficulties?
  • How can communication problems be managed?
  • What cognitive problems are caused by Parkinson’s and how can you care for someone with cognitive problems?

This section begins with a short video of Joyce Quillietti, whose partner has Parkinson’s. She introduces the discussion of communication and cognitive issues by reflecting on how she and her family experience these issues.

Download this video clip.Video player: nc_parkinsons_2016_vid009-640x360.mp4
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Joyce Quillietti
I’m Joyce Quillietti. I live with my husband Bob. And Bob has been diagnosed with Parkinson’s for about 15 years now.
Communication problems are a big issue for people with Parkinson’s. And certainly from our point of view, the first sign of Bob having Parkinson’s was that he had a very masked expression. His career had been built on being expressive in that he was a magician – a successful magician in Scotland – and therefore having an expressive personality was a big part of that.
He had slowed down a lot. So he slowed down in his thinking, et cetera, as well, which made communication difficult. His voice became quieter and a bit more slurred in his speech. And all of that added to you know the fact – ended up in him having to give up being a magician.
Bob has a big, or had a big personality, and he still has that, but it’s very hard to see that now. There are several things that add up to making communication difficult, such as no expression, quiet voice, slurred speech, micrographia, where his writing has become so small that it’s illegible, a slowness in his thinking.
And therefore, in conversation, it’s very easy for other people to step in and answer the questions or to speak on his behalf, which I think is a great shame because locked in that person, locked in that person with Parkinson’s is somebody who has a lot to say. And I think what you have to do is be patient, work really hard at listening to somebody and still give them the chance to have a voice and a say in things, because it’s just too easy to answer for people.
Cognitive issues are one of the things that’s the most difficult for me as the person who loves and lives my life with somebody with Parkinson’s. That’s one of the issues that I find the most difficult because I feel that I’m losing the person that I’m living my life with and have chosen to live my life with and love. And so, yes, there’s –
I would say there was three distinct areas of cognition that we have difficulties with. One is the short-term memory. And that showed itself up just all the time in forgetting to take pills, maybe being in Edinburgh and going the wrong way on the bus – because he’d forget which way he was actually going. Was he going into Edinburgh, coming out of Edinburgh? That kind of thing. So there’s the short-term.
Then also to muddle everything up, people with Parkinson’s sometimes – because of the medication that they’re taking have – experienced hallucinations. And so I found that Bob and I would be sitting in a car, and suddenly Bob would be talking to somebody that wasn’t in the car or was speaking about something that wasn’t happening – as far as I could see wasn’t happening round about us, but was obviously happening in Bob’s eyes. And that muddled his thinking on things as well. So there was a muddling situation.
And lastly, certainly for Bob, there was difficulty in the processing of information, which is why he now has difficulties with things like IT, et cetera, because it’s the – and it’s even the process of what do you do when you switch your computer on. Then which part do you then go to? Can you remember what your password is?
I think the main things for people to make sure that they listen to the person with Parkinson’s. And that the carer or the medical services make sure that they let them have their voice, you know, that you hear their voice about things. So be patient and listen well. And from the point of view of the person with Parkinson’s and their carers, it’s about making sure that you – make sure that people are given the opportunity to listen to you.
Because it’s all too easy when you go along to see the neurologist or the Parkinson’s nurse to go along with one or two main issues, and then you forget the little things. And actually the little things are very important in day-to-day life for you and your family and your friends. That’s all very, very important. And what Bob and I certainly do is every time we’re going to see anybody – a professional of any kind – we write down all of the issues and we make sure that at the end of our conversation, we’ve had all of these issues addressed in some way or another.
Well, I think that because of the communication difficulties – which meant then that he lost his career – his career had to end at that point in time. I think that and all the other difficulties add up to him having low self-esteem, which wasn’t something he suffered from before.
What we definitely do – we write how things have been in the last few months since we’ve last seen the professional, and then we write what the issues have been over these few months and make sure that these issues are addressed. Now that’s us. But that’s the way we handle things. Not everybody is like that.
I know that when we go along, the neurologist just loves it. So we’re not just looking at medication. There’s a whole lot of wider things for people with Parkinson’s that we’re looking at. It may be, it may be mobility issues. It may be speech. They may have difficulty with constipation. There may be all kinds of issues there.
We’re not just looking at them when we go along to see the medics. We’re not just looking at them just saying, well, we’re going to increase your dopamine or not, because that may not be – there are lots of other issues for people with Parkinson’s other than the very obvious ones of movement, et cetera. And so it’s very important that you think about the wider issues for someone.
End transcript
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Learning outcomes

The purpose of Section 3 is to give you an understanding of the processes, procedures, methods, techniques and services used to manage communication and cognitive issues in Parkinson’s.

By the end of this section you should be able to identify and describe the following:

  • the key communication and cognitive challenges of Parkinson’s
  • the impact these challenges may have on the individual and those around them
  • the range of techniques used to address common communication and cognitive challenges, and the appropriate situations in which to use them.

3.2 What communication problems are caused by Parkinson’s?