Volunteer stories: Marianne
Marianne Talbot is a member of the ELSA cohort, which stands for English Longitudinal Study of Ageing. Here, she describes what a cohort is, what being in one entails, and why it's helping to advance the future of dementia treatment.
'When I mention I am a member of a "cohort" I am often asked what I mean. A cohort is a group of people who share certain characteristics. Teachers use the word to refer to students in a given year group – for example, pupils in year ten are a cohort. Medical researchers are usually interested in more than just age.
The ELSA cohort study started in 2002, and the other members and I were all over 50 when we joined. In signing up, we agreed to share information on just about everything. Every two years, I get a visit from someone armed with a very long questionnaire. Every four years a nurse comes to visit and gives me a full physical examination.
All the information collected from me and the other members of the cohort – almost 12,000 people – is anonymised and then made accessible to bona fide researchers. Researchers hope to find links between certain characteristics (including physical, social, economic and genetic) and various health outcomes. They want to find out what biological or lifestyle factors – or combinations of these factors – are associated with diseases.
DPUK is important to the effort because it helps to collate the data from many different cohorts through the DPUK Data Portal. This makes it easy for researchers, whatever their interest, to interrogate all the available data to discover exactly what they need to know. If, for example, a researcher is interested only in post-menopausal women who had high blood pressure at 50 and who have suffered from anxiety, they will be able to isolate that data and analyse it.'
I follow research into dementia not through choice, but through necessity. Both my parents died of dementia and for five years I cared for my mother. From my perspective, the speed of dementia research has seemed glacial, and I’d thought it was all doom and gloom. I’d seen drugs failing, but not understood that sometimes this is because testing on volunteers only takes place late in the progress of the disease, when symptoms appear.
If dementia starts 20 years before symptoms show, then I may be at that ‘pre-clinical’ stage now. Thanks to the Great Minds register, cohort members like me who register can also be contacted for new trial treatments that will allow researchers to explore the value of interventions like drugs or lifestyle adjustments. It gives me great hope that we are now in a position to test these treatments at an earlier stage in the disease when researchers believe they will have greatest impact.
I love being a cohort member because it makes me feel useful. The information that I, and other cohort members, give will eventually bring about new diagnostic techniques, treatments, and hopefully even cures for the diseases that cause dementia. Surely that is worth two hours of my time once every two years?'