The Perspectives of People with Dementia: Research Methods and Motivations

By Heather Wilkinson | Go to book overview

Chapter Seven

Did research alter anything?

James McKillop

I was still in the throes of the aftershock of being told I had dementia, the world stopped all of a sudden, when I asked to take part in research.1 The researcher was asking the question 'Do people have a right to be told they have dementia?' In the past, well-meaning conspiracies sprang into action to 'protect' people from the truth. But could this have had an adverse affect? These cloak-and-dagger activities may have increased the torment of those who knew something was wrong and imagined the worst but kept silent to shield their family. So everyone kept quiet.

Up until then I had never knowingly met another person with the illness and so, never having had the chance to compare case notes, my opinions were unbiased. At least in hospitals you get the instant opportunity to compare lengths of scars and estimates of how much was removed and have the anticipation of telling all and sundry how bad it was, embellishing the story each time naturally.

Rebekah2 came to my home in the role of the researcher, gently coaxing answers with her thumbscrew set. It was fairly painless although the proceedings did resurrect bitter memories as it had been anything but plain sailing up to then. Being unaware of my condition had led to a very difficult lifestyle and family tensions, and the scars still oozed blood. I was in my own wee world comparable to Dante's Hell, completely bewildered and unable to make sense of anything going on around me.

But enough of that, we all have our own crises to deal with as we journey through life. However, we need the best information so that we

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