The Perspectives of People with Dementia: Research Methods and Motivations

By Heather Wilkinson | Go to book overview
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Chapter Six

Should people with Alzheimer's disease
take part in research?

Elaine Robinson

I think that it would probably be best if I started off by explaining who I am, a little bit about my background, and also how I came to be diagnosed with Alzheimer's disease. My name is Elaine, and I am 45 years old. I have been happily married to Dave for about 28 years, and we have two children Paul aged 23, and Gail aged 25. I used to work as a staff nurse in a surgical ward in the Edinburgh City Hospital until a severe spinal injury necessitated two operations for slipped discs in October 1995, which were unfortunately both unsuccessful. This left me permanently disabled and I rely heavily on an electric wheelchair when out of doors, although I can get around the house with the aid of a walking frame or elbow crutches.

I was first diagnosed with Alzheimer's disease just before Christmas in 1999. This first came about due to the keen observations of my psychiatric nurse who noticed that I was having trouble recognising coins, and remembering dates and birthdays, during one of her frequent routine visits. After she reported her suspicions back to the psychiatrist caring for me, he came to the house and I underwent a mini-mental test. Later he confirmed to Dave that I had Alzheimer's disease, and had probably had it since I was 42. Dave and I had both noticed that I was forgetting things, but we always put it down to the strong painkillers and the anti-depressants I was taking as a result of my back problem. Now we had something else much worse to cope with. How on earth were we going to do that?

-101-

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