My Story – A Dementia Study

When I found myself on a Friday afternoon walking through a part of Cardiff I didn’t know, getting drenched in heavy rain and some 150 miles from home there could only be one explanation, Dementia.

To be more precise, I was heading for the Cardiff University Brain Research Imaging Centre (CUBRIC) to take part in the study titled “How do immune genes affect the brain in later life”. The researchers were intending to understand how variations in the genes known to influence the immune system, influence brain structure and function. They want to understand how these genes affect the brain in the hope of developing treatments for individuals at high risk of brain disorders such as Alzheimer’s disease. I had been part of the Kings College London PROTECT study into dementia since late 2015. While the PROTECT study was online cognitive testing, this research involved actual examination of my brain using MRI scanners.

CUBRIC is an impressive modern building a short train ride from Cardiff central. It has multiple MRI scanners of various strengths including scanners that allow the subject to sit and perform tasks during the examination. CUBRIC is a research establishment rather than a clinical facility so has a more relaxed atmosphere than I had on previous visits for clinical scans.

On arrival I had a long talk with Dr Thomas Lancaster (Tom) who is leading the study and Dr Hannah Chandler, a Research Fellow and specialist in neurovascular imaging. The reasons for the study, its background and what would happen during the afternoon were explained. I also signed a lot of bits of paper. One was confirming I did not have any metal in my body, no tattoos and I was not pregnant. I seemed to sign this particular declaration multiple times as the afternoon went on. Tom went to great lengths to explain that as a volunteer I had the right to stop at any time, I had the right not to have my data used in the study and I could just walk away, they would even still pay my expenses for the journey.

Having been through the paperwork and answered my questions it was time to gown-up and get ready for the first scan. This was in one of the standard 3 Tesla MRI machines and would take about an hour. To be able to test the effect of increased carbon dioxide on the brain during this test I was fitted with a mask so the levels could be controlled and measured to ensure there was no danger. Getting a mask the right size proved a challenge but eventually I was kitted out like Hannibal Lecture and slid into the MRI machine.

Though this was not my first MRI scan it was still an effort of concentration to lie still in a confined space with a considerable number of strange sounds going on. I had my panic button and Hannah spoke to me at various stages in the scan to check I was still OK, tell me what was happening and how long was left. Talking to Tom later I found out that one of the conversations was because my finger pulse monitor showed I was getting stressed. Laying still on your back for an hour can have that effect.

Having been through the initial scan and the testing with slightly increased carbon dioxide it was time for a cup of tea, a longer conversation about study and another round of document signing ahead of a more fine-grained scan in the 7 Tesla machine. Getting into this scanner was more of a problem when the sliding bed wouldn’t work. While I went outside to complete a questionnaire on my family health the well know reboot solution was applied to the scanner. After a reload it was all working. I had been warned that the large change in magnetic field entering the machine could make me feel strange, it did. It felt rather like laying on the floor drunk with the room spinning slowly. Once inside though there felt no difference to the previous scanner. This scanner had a TV screen I could watch but with no sound due to the volume of noise from the scanner.

Without the mask this was a much easier scan though it did feel that the stronger magnetic field had more of a physical effect on me and I got up feeling like I had been doing some exercise rather than lying flat. I was then treated to another cup of tea and a long talk with Tom and Hannah about the study, the large amount of data that was being collected and methods of ensuing data was anonymous as well as useful. Finally, I left CURBIC to find the rain had stopped and I was ready for a night out in Cardiff with its many bars and excellent restaurants.

The afternoon had, for me, been interesting and informative and I hope that the data collected can contribute to finding ways of early intervention for what is becoming an increasingly prevalent disease as more of the population are living longer. According to the Alzheimer’s Society ‘There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025.’1 This will soar to 2 million by 2051’. Almost everyone has experience of dealing with someone with dementia, either directly or through friends. Money for research is increasing but never enough. However, as well as cash research need volunteers prepared to be studied. These include people before they show any signs of dementia so researchers can understand the working of the brain and how it changes with age and disease.

Gemserv is supporting the Alzheimer’s Society as one of its’ charities of the year. Throughout 2019 we have been having bake-off’s, coffee mornings and general collections to raise money for this worthwhile cause.

1 Taken from information on the Alzheimer’s Society Dementia hub

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