“Towards the end, my mum had lost all her memory, she didn’t remember or understand what was going on around her in the present. My mum used to love dancing with her father when she was younger and I knew she remembered those earlier memories a clearly as ever. The last conversation I had with my mum, before she passed away, I kissed her forehead and said she can now dance with her dad again. I knew this would give her comfort.”
My name is Stina Saunders and I am a researcher on the PREVENT study in Edinburgh – above is only one of the many touching stories the PREVENT participants have told me about when discussing their reasons for wanting to be involved with dementia research.
My background is in clinical psychology and I have found that working on the PREVENT study is quite a different experience from other clinical research I have been part of – when we opened our recruitment in September this year, within merely two days, 100 people had signed up to volunteer their time and efforts to our worthwhile cause. The surge of interest was so great in fact that we were forced to temporarily close the recruitment in the first week! It was overwhelming how many people were willing to give up their time to advance research in dementia.
For a researcher, PREVENT is an unusual study not only because we are clearly touching on a sensitive issue many people deem worthwhile and wish to contribute to, but also because we have an incredibly wide range of people volunteering their time to us as study participants. The study visits and particularly listening to the participants talk about their lives, to me, are the most interesting part of the job. Throughout the day, we ask participants about many aspects of daily life.
The study visit is a day of interacting with a team of researchers – Research Nurses, Psychologists, Study doctors. We are extremely aware that our study participants are working age people and we aim to be considerate of the time they take out of their busy lives to undertake the study assessments. As the year draws to a close, we will not be seeing any more participants before the next year – new participants will come in with new stories, backgrounds and reasons for volunteering their time and we are looking forward to meeting with them all and adding their exceptionally valuable data to our database.
My job is to coordinate the study visits – as such, I’ve been chatting to dozens of people who have signed up for our study. We think of our study participants as part of our research group – they are not only participants but collaborators – testament to this is our participant’s kindness with their time. As well as time, we are delighted that some people feel able to make philanthropic donations through our membership scheme (an idea for a last minute Christmas present?!). This allows us to include more and more people in the study and get more data for meaningful results that will be published in medical journals and help us understand the risks associated with dementia.
To the lovely participant who shared the memory of her mother who lived with dementia and to everybody else who feels a connection with our cause, thank you for taking the time to come to our study and thank you for considering volunteering your time to all our future participants.
A happy Christmas to all! Edinburgh participants, we will see you again in two years time!
Very best wishes for a joyful 2016,