This was originally published by the National Institute for Health Research.
Who was diagnosed with early-onset dementia and now spreads the word about research
Tell us a little bit about yourself Tracey
I used to work as a community nurse until I was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) in my mid-forties. I had to give up work once my balance and speech were affected but these days I go out into the community and give talks to people who have recently been diagnosed with dementia. It’s great to go out and pass on positive messages to people who are often concerned or worried.
What made you first want to get involved in research?
As a nurse I always knew about research but I never really got involved before my diagnosis. However, afterwards one of the first things I did was sign up to Join Dementia Research and see what studies were going on that I could take part in. I know that the chances of taking part in a study that could impact my diagnosis are small but it’s about helping future generations and, hopefully, finding a cure.
Why is research important to you?
It’s about being positive and trying to help make the lives of future generations a little easier. In my experience though, it also helps me to push myself and challenge my brain a little bit.
What activities have you been involved with?
I wanted to ease my way in at first and I didn’t really fancy taking part in any drug trials so it was great to find out that there is a whole range of different studies going on, many of them not involving drugs or medical treatments.
I’m currently involved in the IDEAL study. I’m in the second year of three and it’s great because the team visit me, which allows me to take part in a study from the comfort of my own home. It involves questionnaires and lots of questions from the team but it helps me push myself and leaves me feeling proud and empowered.
What would you say to others who are considering getting involved in research?
I would definitely recommend getting involved with research, and I regularly do at the talks I give! It’s not only important to help find treatments for future generations but it’s useful for the participant too. Taking part in research has helped me to learn more about my condition and it’s nice to be able to talk about it with people who are experts in the dementia field.