Other ways to get involved

Wendy Mitchell talking about why she became a Research Champion

My name’s Wendy Mitchell and I was diagnosed with young onset dementia on July 31st, 2014.

And I might not have much of a short term memory, but that’s one date that stays clearly in my head.

The worst episode was coming out of my office one day and not knowing where I was or who all the people around me were.

I hid in the ladies for a few minutes and then the fog cleared and I knew where I was again but obviously there was something not quite right.

Eighteen months later, they diagnosed me with young onset dementia.

I was given a handshake, a sad look and told there’s nothing we can do.

I was discharged.

So I went into this deep depression because I thought it was the end,because no one told me any different.

Well after a little while, I started to meet other people with dementia.

Here I was looking at a woman who’d been diagnosed for ten years and she was speaking eloquently on a stage.

And she was involved in research.

And so that gave me that hope for a life still to be lived.

I started to be involved in medical, social, technological research.

The first research project I was involved in was trialing a drug that was currently being used to treat people with acne and they were trying to repurpose it to help people with dementia.

But one particular one was called the IDEAL study.

It involved simply me meeting someone once a year to go through their questions to see how my dementia had progressed, how I was coping with it.

So my giving up one hour of my time, once a year, to answer questions has developed into something that helps other people newly diagnosed.

What’s not to love about it?

Then I was suddenly asked to be involved in the launch of Join Dementia Research. This website that would actually change the way researchers found participants.

When I became a research champion, I could convince other people that research was the way to go.

Once I can explain how valuable it is for me as well as for the research, not a researcher explaining what they do, then people take part.

I’ve been to many events. I’ve been in meetings with clinicians and I’ve mentioned that I’m a Join Dementia Research champion and amazingly many of them haven’t heard of it.

And so then I can hand out my leaflets and tell them all about it and I’m always happy to talk to members of the public too, to encourage them to experience the joy that I’ve experienced from taking part in research.

People have this image of research being men in white coats giving out dodgy drugs.

In my support group, I asked them “How many of you would like to take part in research?”

And no one put their hand up.

I then asked them, “How many of you would like to take part in changing the way dementia looks in the future?”

And they all volunteered.

We can’t change the future unless people take part in research.

Dementia strips away so much and being able to take part in research just makes you feel that valuable part of society again.

It gives you hope for a better future.

Developed in partnership:
NIHR | National Institute for Health and Care Research
Alzheimer Scotland | Action on Dementia
Alzheimer’s Research UK
Alzheimer’s Society | United Against Dementia