Taking part in dementia research: Georgina’s Story
Having witnessed the effects of dementia on her family, Georgina Shomroni, who works at the Bodleian Libraries in Oxford, is a passionate advocate for participating in research. She has signed up to Join Dementia Research and already agreed to take part in two studies.
Georgina, 54, has sadly seen the effects of dementia first-hand as multiple close family members have been diagnosed with the condition over the years. Her grandfather had Alzheimer’s disease back in the 1970s, and both her mother and aunt were diagnosed with dementia late in life – her mother, Maisie Shomroni, had vascular dementia and her aunt, Betty Fernandez-Armesto, Alzheimer’s disease.
Maisie was diagnosed with vascular dementia in 1997, and Georgina went on to become her primary carer, looking after her mother by herself. Betty lived around the corner from them and Georgina was looking after her too, until she moved to a residential care home for the last two years of her life.
Talking about the effects of dementia, Georgina says:
“My mother actually died of cancer back in 2010, which felt like an odd relief. I was starting to get concerned she could become a risk to herself and it would have been devastating if she could not recognise her own daughter.”
Playing a part in dementia research
Georgina and her family have long been advocates for clinical research. Georgina’s aunt Betty took part in a dementia research study, and she encouraged Maisie to take part too. Both Maisie and Betty also donated their brains to research after they passed away.
Georgina believes strongly in the power and importance of research:
“We’ve come a long way in medicine, and research is the reason. The brain is incredibly complex but the more we know, the better our chances to slow, stop and even correct the disease; to give people back their minds and to give people their families back.”
After her mother and aunt had taken part in studies, Georgina wanted to do something too. She registered with Join Dementia Research to find out about studies she might be suitable to take part in. She has signed up to take part in an online brain training study which is a large study aiming to investigate the long-term effects of brain training games in adults over 50. She plays various games once a year, online from the comfort of her own home. But she wanted to do more to help.
Then, just a couple of months ago, she received an email letting her know that she might be suitable to take part in the PREVENT Dementia trial. She jumped at the chance.
The PREVENT dementia study
PREVENT Dementia is a long term study aiming to identify some of the earliest signs of neurodegenerative disease and relate these to a range of risk factors which may play a role in the development of Alzheimer’s Disease. The idea behind PREVENT Dementia is that if you can identify the very earliest stages of neurodegenerative disease before dementia, then specific interventions could be developed to slow the progression of these diseases and therefore delay or prevent the onset of dementia.
The Senior Research Nurse working on the study, spoke to Georgina about what the study entailed and her first visit was in August this year. It was an intense day, with activities from 9am-5pm, with a half hour lunch break. The first set of tests provides the researchers with measures to indicate the participant’s current state of health. Participants will then repeat the tests two years later so the researchers can see how things have changed.
The health tests included a blood test, being weighed, blood pressure, an ECG, urine tests and saliva samples. During the day she also completed a number of different cognitive tests measuring different functions such as spatial awareness, speed of reaction and short term memory.
“The PREVENT Dementia study seems to measure every aspect of the brain. One of the things I had to do was draw a clock face showing a particular time. I remember that when my mother had dementia, she once did this test all the numbers were bunched on one side of the circle.”
Verbal tests included naming as many animals as she could in a minute. She particularly enjoyed the ‘shopping trolley test’ which is done on a computer – ‘virtually’ pushing a trolley around supermarket aisles and then determining where you have come from and where the entrance is.
There are still a few more tests that Georgina will take part in for the study this year. She’ll be having an MRI scan and an optional lumbar puncture too.
Georgina says the study team have been very good to work with:
“They explain everything. They want to make sure that you know exactly what’s going to happen and are still happy to proceed. All your personal information is handled well and becomes anonymous.”
A great experience
Georgina thoroughly enjoyed taking part in research and strongly recommends that others get involved too:
“Taking part in the PREVENT Dementia study was brilliant. I’m really pleased I got involved.
“I’d love more people to volunteer for studies as the only way we can move forward is if people take part. I’d urge people to look at the study carefully to be sure it’s right for you. If you’re happy to do what’s involved and you have the time, then go for it!
“I get huge satisfaction taking part in research. I feel most of what I’m giving is time, but what I’m actually giving is a chance for something amazing to happen. Who knows, one day I might see a headline that could be partly because of me and I’ll be able to say, ‘I played a part in that!’”
Do you want to take part in dementia research studies? Sign up to Join Dementia Research today.
You can also read more about the PREVENT Dementia study here.