Involving people with dementia in research

My previous post was about the ‘training week’ INDUCT School in Maastricht, The Netherlands. A week full with opportunities. One opportunity was getting to see a presentation about Alzheimer Europe and how they support people with dementia. Alzheimer Europe made sure we got to see speakers from The European Working Group for People with Dementia (EWGPWD).

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Alzheimer Europe and the EWGPWD are partners of INDUCT which is a research project I’m currently involved in. I’ve heard inspiring stories from people with dementia and how they did not give up on life. Instead these key speakers and their loved ones got involved in research and policy about dementia, collaborate on various levels and most of all let people like me know what the key issues are. It was Chris Roberts  who told about the fear some people have when it comes to research and he said “Getting involved in dementia research is not scary it’s valuable!” For example through the website #HandoutHope and to Join Dementia research.

http://handouthope.today/talking-research/

After the presentations, I discussed my research about surveillance technology, and how this can potentially (dis)empower people with dementia and or caregivers. This time, I was the one being empowered because of some good advice. At the end of the day I thought; how valuable is this, involving people with dementia and caregivers in my research.

Yet, this was my intention from the start, having discussions with people with dementia and caregivers. However, ethical approval is being a lot of work. Not that I don’t mind the work load, its more being impossible to get ethical approval  Especially considering that I will do research in three countries where I’m not a native.

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I know, ethics are important and it does exist to protect people. Eventhough I wished we could sometimes get easier access to valuable information.

 

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