I have dementia and I take part in research. Here’s why.

In this blog, Wendy Mitchell, who has young onset dementia, writes about taking part in dementia research, being valued, and opportunities to change the future.

Page last checked 14 March 2023


Imagine yourselves being given a diagnosis of young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more. Services are non existent so you feel abandoned.

That’s what happened to me in July 2014 when I was diagnosed with young onset dementia.

Now, imagine, if someone then came along and asked for your opinions, asked you to be involved in gathering information. Someone who was genuinely interested in what you had to say. Someone who was willing to travel to your home just to see you. Imagine how that would make you feel…

Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had an valuable opinion and views that mattered.

That’s what happened to me when I started to be involved in research.

Wendy Mitchell and her daughters
Wendy Mitchell and her daughters

Taking part in dementia research: an alternative to just hoping

As soon as I was diagnosed I wanted to take part in research – however, my clinicians decided for me that I wouldn’t want the hassle, so never offered me the possibility. So I found it very difficult to find any sort of research to take part in initially. So when I was asked to help launch and promote the  Join Dementia Research database, I jumped at the chance.

We need to have an alternative to just hoping and wishing you don’t get dementia but this can only be achieved through research. Being involved makes you feel valued as you’re contributing to possible future developments – you could be helping to remove the inevitability that a diagnosis currently brings, giving hope to your children. We all know there is no cure and without willing volunteers to test new theories, there will continue to be no cure..

However, I know researchers can find it very difficult to find people who will to take part. This may be due to overprotective clinicians, or overprotective family and friends, but may also simply be due to lack of understanding around the meaning of research and what it entails.

Engaging people with dementia

That’s why I feel language is so important when trying to engage people with dementia. When I asked a group of people with dementia, ‘who would like to be involved in research’? No one put their hand up. When I asked them who would like to be involved in changing how dementia looks in the future – everyone put their hand up. When I asked them why they didn’t like the word ‘research’, they said because they didn’t want to be guinea pigs. They associated research with men in white coats handing out dodgy drugs. So we’ve a long way to go to bust the myths surrounding research, but increasingly, through initiatives like Join Dementia Research, we’re able to show that taking part in research isn’t just about clinical trials.

hands up
Everyone wanted to change dementia in the future – but they didn’t like the word ‘research’

Technology testing, trials and me!

While I was still at work I took part in some social research run by the University of the West of Scotland which looked at the experience of those of us with dementia and still in employment. I’ve also tested many apps for the iPad. Future generations will expect things like apps or some sort of technology as its part of their everyday life, so I’m pleased to be involved in testing and developing these. If I can use them anyone can!.

I’m taking part in the IDEAL trial which is a 3 year trial looking at living with dementia – it involves answering questions in your own home about every part of your life for the next 3 years to see how circumstances and attitudes change. I’m doing this alongside my daughter who is answering the exact same questions from a relatives point of view.

I’m also about to have my second visit as part of the PRIDE trial – another social research study looking at remaining independent with dementia.

I’m now looking for a new clinical trial as I’ve just finished the MADE trial, a 2 year trial  testing an antibiotic drug currently used in the treatment of acne – they believe it may reduce inflammation of the brain. I’m told there’s many new ones on the horizon, so I’ve just got to be patient.

Social and technological research is equally as important as clinical drug trials, especially for those of us living with dementia now. We have to find the best ways to live and adapt to the disease and we have to find the best ways to care for people who can no longer care for themselves.

Involve us from the start in dementia research

Who better for researchers to work with from the very start, than people living with dementia. Just because we have dementia doesn’t mean we’re not capable of advising you on project design; just because we have dementia, doesn’t mean we can’t be involved with committees – after all how do you know you’re getting it right if you don’t involve the very people you’re hoping to interview? Involve us in promoting your research and to encourage others to take part – to encourage those who have never taken part to be involved. We all had talents before a diagnosis of dementia – we don’t suddenly lose all those talents overnight when we get a diagnosis.

Join Dementia Research logo
Who better for researchers to work with than people with dementia?

Let’s normalise talking about research

We have to normalise talking about research and to do this we must have GPs and other healthcare professionals, like district nurses or OTs or physios, all  coming on board. These are often the very people we see most often. To normalise talking about research would normalise involvement. That’s why a few of us along with Piers Kotting, have launched the Hand Out Hope campaign. To encourage all healthcare professionals to hand out hope in the form of a Join Dementia Research leaflet as words of encouragement costs nothing and eats into no ones budget.

Without research we can’t change the future…

Many people with dementia have a variety of ways of keeping their brain active. For me being involved in all things research  helps keep my brain ticking over. Whether it’s through participation in trials, testing apps for my iPad – which by the way, I didn’t even own or know what an an app was before dementia entered my life. Whether it’s through reviewing paperwork, being a member of your steering group or project team, as a member of the Alzheimers Society Research Network or simply researchers emailing me, asking me for my opinion.

We all had talents before a diagnosis of dementia – we don’t suddenly lose all those talents overnight

I have dementia, but…

So, as you can see, I have dementia, but I’m still able to contribute to society. Many people when they hear the word ‘dementia’ think of the end. Well we’ve got an awful lot of living still to do and people so often forget that, especially when diagnosed with young onset.

That’s also why I like to get involved at talking and helping students. Those at the beginning of their career, after all they’re the researchers of the future. They have so much less baggage and pre-conceived ideas. They’re also full of enthusiasm to learn and understand more about dementia. They can help change the future of dementia, to change views, perceptions and reduce the stigma around dementia.

So I’m here as someone all researchers seek out on a daily basis – a willing participant….

being involved has given me back that sense of purpose that a diagnosis of dementia stripped  away from me

Why am I so willing? Because I like to be involved,  because being involved has given me back that sense of purpose that a diagnosis of dementia stripped  away from me.

Being involved  makes me feel valued and people listen to what I have to say…….which a diagnosis of dementia stripped away from me

So if you look carefully there are many people out there just waiting to be valued once more – waiting for someone to ask them to be involved – waiting to be valued once more after being given that devastating diagnosis of dementia – unless you ask them, they won’t realise the benefit of being involved.

Wendy Mitchell has nothing to disclose.

I have dementia and I take part in research. Here’s why. by Wendy Mitchell

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

20 Comments on this post

  1. Thank you for all the wonderful encouragement through your hard work and dedication to this worthwhile cause. You are the difference.

    Joanna / Reply
    • Goodness me Wendy, you are an inspiration to people worldwide. Such a fabulous advocate and trailblazer.

      Mary / (in reply to Joanna) Reply
  2. great work! Well done.

    Noel / Reply
  3. This could be the very thing that gives back my partner the dignity and sense of usefulness he feels he has been robbed of after his recent diagnosis. Thank you!

    Celia / Reply
  4. Well done Wendy, for your amazing story have a positive outcome. Inspires me to learn more.

    Lorraine Gonzales Papas / Reply
  5. I am sure your attitude will rub off on others who have been diagnosed with dementia Wendy,
    and that is a very positive thing!

    Joanna / Reply
  6. Hearing of you and what you’re doing Wendy has buoyed me up no end. Must find your book.
    I’m a 77 year old woman who was told at the age of 75 she had vascular dementia after being admitted to th Royal Hobart Hospital in Tasmania, Australia.
    Thanking you in anticipation, Patsy Harmsen

    Patsy Harmsen / Reply
  7. Great work Wendy. By being involved in research you can help many others including yourself. I will try to get your book to find out more about you.
    God Bless.

    Maryrose Peacock / Reply
  8. Love to hear of the research and the IDEAL study.

    Lorraine Joyce McMurtrie / Reply
  9. I love your positive attitude! Thank you for you all you are doing and for sharing your personal experiences with us. You are an inspirational lady.

    Carol Fountain / Reply
  10. Excellent the way you changed the direction of your life, Wendy, for not only yourself but also for those many dementia sufferers, diagnosed or not, who stand to benefit from useful research outcomes. Very well done!

    Geoff O'Meara / Reply
  11. Thank you Wendy, without people like you we will never fully understand Dementia.

    Lorraine Tye / Reply
  12. I love your positive attitude to life and living with dementia. A diagnosis doesn’t have to be all ‘doom and gloom’ as you’ve proven. In some respect, you’ve opened up new doors and embarked on ventures that you wouldn’t otherwise even thought about. Your achievements are a testament to your strengths, passion and intelligence.

    Marie / Reply
  13. Loved your book, Somebody I used to Know’. Thank you for sharing your journey, Wendy. Very insightful and inspiring to see your determination and fortitude in the midst of difficulty. Much respect and gratefulness. 😊

    Pam Browne / Reply
  14. Good on you, Wendy! It’s really inspiring to read about what you’re doing. My 84 year old dad has dementia and has been in a nursing home for a few months now. This prompted me to enrol in a free online course on dementia run by the University of Tasmania to learn more. I’m nearly 56 and am concerned I might have dementia too or will have. With an ageing population worldwide it’s a growing problem and we need to find ways to deal with it better.

    Stuart Highway, Sydney, Australia

    Stuart Highway / Reply
  15. Great work Wendy. You are actually a asset in many ways. Please keep up the great work, and thank you to Wendy’s family too who are supportive.

    margaret / Reply
  16. What a valuable contribution you are making Wendy. Clearly you have important insights and experiences and you are
    sharing your knowledge so generously.

    Denise Galloway / Reply
  17. Making people feel valued. Great idea.

    Iris Harvey / Reply
  18. Wonderful initiative.

    Vivienne Morgan / Reply

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