‘Join dementia research’ is all about connecting volunteers to researchers, and helping them work together to beat dementia.

Wendy MitchellSome of those volunteers have stepped up to champion the new service around the country, and today we spoke to Wendy Mitchell, an NHS employee with a recent diagnosis of dementia. Wendy hasn’t let it slow her down at all, and now she leads the way in promoting research!

She is 58 years young, lives in York, has two daughters and is currently still in full time employment at St. James Hospital in Leeds. However, she is now in the process of taking early retirement to give her a chance of enjoying life while she is still herself.

Once she got over the initial trauma of diagnosis she began to search the web for opportunities to take part in research.

“I was perfectly placed to make something positive come out of such a distressing situation and felt able to make a valuable contribution to current research.

After much searching I found a study being carried out by the University of the West of Scotland on ‘Dementia in the Workplace’.

I’m currently working with a wonderful researcher who is clearly a committed academic who goes the extra mile to gain a holistic view of my experience of dementia.”

I’ve now just embarked on a 2 year clinical trial, looking into the possible advantage of taking the antibiotic drug, Minocycline, currently used in the treatment of Acne. The aim of the trial is to determine whether it might be of benefit in Alzheimer’s disease by slowing the expected rate of deterioration.”

What made you decide to get involved with ‘Join dementia research’?

After I received my diagnosis, I immediately started to look for research to take part in, but it was hard to find any. I’ve been shocked and disappointed to discover the difficulty researchers often have in finding enough volunteers to take part, and at how difficult it was for me to find local studies in particular.

‘Join dementia research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

How have you been involved with the service so far?

I was very lucky to take part in the ‘Join dementia research’ media training, which enabled me to experience what it’s like to be interviewed in front of a camera, and with a radio mic. Such an opportunity wouldn’t have arisen if I hadn’t been diagnosed with dementia, so out of a bad diagnosis has come something positive.

Promoting ‘Join dementia research’ is enabling me to meet people whose path I wouldn’t have otherwise crossed, and I’ve met others with dementia and encouraged them to register. I’m still working full time at the moment, but I’m due to retire in the New Year, and I hope then to be able to promote ‘Join dementia research’ to an even wider audience.

One of the ways you have been promoting ‘Join dementia research’ is by posting about us on your blog – thank you! What made you decide to start a blog about dementia issues?

Initially it was my way of letting family and friends know I was okay – many of my friends are scattered around the country and although I’d lost my confidence on the phone, I can still write fluently, so a blog seemed to be the perfect medium to communicate with people.

I hadn’t expected total strangers to be interested in my story, but my blog’s been read in 35 countries now! If it’s made a handful of people reconsider their vision of people with dementia then I’ll be happy. It’s also been a medium for me to promote and raise awareness of the different ways people can get involved with dementia and the work of people like the Alzheimer’s Society and ‘Join dementia research’.

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What other methods have you been using to help and encourage people to sign up to ‘Join dementia research’?

Our local Halifax Building Society have been raising money for the Alzheimer’s Society over the last year, so I took the opportunity to ask them to display a poster on their community board, and I left leaflets for the staff and for them to leave out for customers.

I’ve worked in the NHS for 20 years, so many of my friends are connected with the NHS and quite a lot of them are Practice Managers, so I’ve signed them up to promote ‘Join dementia research’ in their surgeries and amongst their GPs. I’ve also been to my local surgery and asked them to cascade the posters and the leaflets to each of their GPs within the practice, which is very large.

I also attended a dementia forum last week, two of the speakers were university students who are starting research into dementia, and there was a psychologist from the local memory clinic who hadn’t heard of ‘Join dementia research’ so all of them were sent home with posters and leaflets – as well as all the attendees.

Promotional materials for Join Dementia Research are available for free – please take a look!

What do you want to tell people about the service?

I think signing up to ‘Join dementia research’ will allow future generations to be less afraid of having a diagnosis of dementia. One advantage of receiving an early diagnosis like myself, although it’s traumatic at the time, is that it gives you the opportunity to start medication sooner, which may slow down the progress of this condition.

When people ask me ‘why should I sign up?’ I say to them ‘Why not? What have you got to lose?’ You have more to gain and contribute to dementia research by signing up, and in the future you may be grateful for all those volunteers – because one day it might be you, or a loved one who is faced with that diagnosis.

You can read more about Wendy’s experiences at her blog: www.whichmeamitoday.wordpress.com


Lady-LookingatleafletFind out more about Join dementia research, and you can help, by clicking on ‘Why sign up?’. You can also help us spread the word online, through social media, and with our free promotional material.

Have you been involved in a study on the service? What did you learn? If you are interested in telling your story, please complete the online sign up form.

If you would like to share your story, please email us at comms.jdr@nihr.ac.uk. Please follow us on Facebook + Twitter and share your story!