This week is Dementia Awareness Week and we’re kicking off the week with an interview with our newest Champion, Jacqui Cannon. Based in Billinge, Merseyside, she got involved as a Join Dementia Research champion in March this year and has been spreading the word about the service ever since!

Jacqui Cannon, Join Dementia Research Champion

Jacqui Cannon, Join Dementia Research Champion

What made you decide to get involved with Join Dementia Research?

I lost my Dad to Dementia with Lewy Bodies in 2010 and I’d started volunteering with the Lewy Body Society a couple of years before that. I’d taken on different roles over the years and in February this year, I was approached by the trustees and became CEO full time.

Once I’d joined the charity in February, I was contacted by Angela Aldridge, Divisional Lead Clinical Studies Officer in the Greater Manchester region. She’d previously been in touch with one of our Society’s ambassadors, Peter Ashley, who had sadly passed away at the end of last year. I met with Angela who told me all about Join Dementia Research and as a consequence of that I was quite excited about the the service, so I said I wanted to be a champion!

Why do you think we need to get people to take part in dementia research?

I just think it’s a really exciting and important thing to be involved in, both on a professional and personal level. As I mentioned, my Dad had Lewy Body Dementia, but also his brother and one of his two sisters had Alzheimer’s. So I’ve seen people go through it; I’ve cared for people that have experienced it. That was an incentive for me to get involved in any research that I could.

I think it’s important that we do research so we can understand more about the disease. For me, I want to understand ways you can reduce your chances of getting dementia or whether having a family member with a particular type of dementia increases your own risk. But, Lewy Body Dementia aside, I think research into dementia in general is essential; so it’s all about raising awareness and getting the message out there to people.

How have you been involved with the service so far?

Any chance I get to talk about Lewy Body Dementia, I also talk about Join Dementia Research. Whether it’s a formal presentation or just a conversation with a few people, I always make sure I have a supply of leaflets in my bag!

Since becoming a champion we’ve been sending out Join Dementia Research leaflets out alongside our Lewy Body Society materials. Every other Friday, I attend a local business group meeting. The Lewy Body Society is their nominated charity, so I do a presentation explaining ‘What is Lewy Body Dementia?’. Alongside this I talk about ‘What is Join Dementia Research?’

A couple of weeks ago I gave a speech at a reception with the Deputy Lord Mayor at Manchester Town Hall. I’ve also been to Museum of Liverpool, which has a ‘House of Memories’ dementia awareness training programme. I went to a session there and spoke about Join Dementia Research.

Even with friends and family, I’m always encouraging people to register. I recently had two friends come over for dinner and the first thing I did was give them a Join Dementia Research leaflet!

I’ve registered myself, and in June I’ll be taking part in a study in Salford Royal Hospital. I’ve also just downloaded the Sea Hero Quest app from Alzheimer’s Research UK.

How do you encourage people to volunteer for Join Dementia Research?

Some people can be apprehensive at first, thinking it might be lab work or take up too much time so I put it into perspective for people – it doesn’t have to be a massive commitment. It’s what will work for them and fit into their lifestyle. I might say,

“It’ll take you ten minutes to register online, you’ll just be registering your interest. You can choose whether you then want to get involved in studies depending on the type and level of involvement. For example, it might be an online cognitive test twice a year.”

Once I do that, they are very happy to come onboard and I’ve had very positive responses so far!


Jacqui is CEO of the Lewy Body Society.

Read more about studies investigating Dementia with Lewy Bodies on Join Dementia Research.


Martin-In-GardenWant to join dementia research? Sign up today!

Find out more about Join Dementia Research, and how you can help, by clicking on ‘Why sign up?’.  You can also help us spread the word online, through social media, and with our 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 our online form.

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