Update 2: The layman's summary

24 August 2020

As promised, I would like to keep you informed about the COPIED study that will start in October 2020. This time a short update: The Dutch Parkinson's Association wanted to receive a summary for the layman. Below you can find the version as we submitted it.

Lay summary COPIED study

A self-help tool full of detours for obstacles in thinking

A considerable number of people with Parkinson's suffer from obstacles in thinking, often even before the diagnosis. These include problems with attention and concentration, memory, speed of thinking and acting, keeping an overview and planning, stimulus processing and carrying out (double) tasks. There are as yet no scientifically substantiated aids for circumventing such obstacles.

In the meantime, people with Parkinson's are incredibly creative in finding detours so that they can still carry out their daily activities. It is these detours that the researchers of the COPIED* study are going to copy, as it were: they are going to collect tips and tricks, test them, bundle them, transform them into a learnable form and then distribute them again. Copy-paste.

Step by step

The self-help tool should be in use in two years' time. To get there, the researchers will work step by step: First, they will make a classification of the obstacles and detours already collected during the training course 'Parkinson? Keep your attention!" training course of the Parkinson's Association. They do this with a scientifically tested model for information processing. The research team then sharpened the nature of the obstacles and detours with a number of group meetings and a survey. Then they translated it into a self-help tool and the target group actually started using it. After the researchers have asked what works well and what doesn't, a process of improvement follows. Finally, they disseminate the final self-help tool as widely as possible among patients and their families, who can then use the tool to get tips from their fellow patients and their families.

For and by people with Parkinson's

A special feature of this research is that it is led by Parkinson's patients. The question arose from Marina Noordegraaf and Edwin Barentsen, both patient researchers at the Parkinson Association. They experience their obstacles in thinking as a greater impediment in their daily functioning than the physical problems. Based on the need for a methodical and scientific approach to the research, they were able to complement the team with Dr Ingrid Sturkenboom, an expert in occupational therapy in Parkinson's disease, Dr Esther Steultjens, an expert in daily functioning, cognition and cognitive strategy training, and a knowledgeable sounding board group with a mix of patients and researchers.

The research can be followed on https://www.copiedstudie.nl. For questions or input, please contact Marina Noordegraaf at marina@copiedstudie.nl.

* COPIED is an acronym for "Cognitive Obstacles & Detours in Parkinson's: Information Processing Tips for Every Day".

Update 2: The layman's summary

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