In the spring of 2022, Rita sent her husband Clive out to the local supermarket to get a few bits. The list wasn’t that long; it was a routine errand. But a little while after he left the house, Clive called his wife, saying he couldn’t remember how to get there.
The next day, Clive had to take some items to the tip. But again, a normal job turned into something else when he couldn’t remember the way.
“He’s lived in this area for 50 years,” Rita says. “He knows where the supermarket and the tip are. But he couldn’t remember the directions and where to go. We knew something was wrong.”
Clive went to see his GP and was referred to his local memory clinic. He was assessed and had an MRI brain scan. They were then given the news they feared.
“It was Alzheimer’s,” Rita says. “It was really difficult and took a long time to process and come to terms with. There are two levels of it – the emotional level, where you have to realise the person you love will change and leave you behind and then the day-to-day practical level, where I will need to be there all the time. It’s been a lot to deal with.”
Every three seconds, someone in the world develops dementia. There is no cure, and treatments are limited. People with dementia may only begin to show signs of the disease 20 years after the changes in the brain start to occur, by which point treatment is far less successful. Early diagnosis is therefore imperative to allow us to give future generations a better chance against the disease.
Clive was prescribed a treatment called Rivastigmine, which is used to treat mild to moderate dementia (memory loss and mental changes) caused by Alzheimer’s disease. Rivastigmine will not cure or stop Alzheimer’s disease from getting worse; however, it can improve the thinking ability in some individuals.
The couple, who met on holiday in 2017, have thrown themselves into taking part in research to find new treatments. Alongside the team at the Memory Assessment and Research Centre (MARC), Clive participated in a 3-year clinical trial assessing whether semaglutide, a medication primarily used to treat type 2 diabetes by improving blood sugar control, could have a positive effect on early Alzheimer’s disease. He has also taken part in an observational study called READ-OUT, which aims to identify blood tests to diagnose dementia more accurately and quickly than current methods.
Currently, most people are diagnosed with dementia using memory tests and brain scans. These are less accurate than ‘gold standard’ tests like PET scans or lumbar punctures, which can help to confirm what type of dementia they have. However, only 2% of people in the UK can access these specialist tests due to a lack of availability.
Blood tests could provide a much easier way to diagnose people quickly and accurately at an earlier stage. This will help people access care and support, but also means the NHS is ready if new treatments are approved.
The READ-OUT study aims to identify the best set of biomarkers for diagnosing Alzheimer’s disease and other types of dementia, including vascular dementia, frontotemporal dementia, and dementia with Lewy bodies. Participants give a blood sample, which the team uses to select the most effective panel of biomarkers. It is led by Professor Vanessa Raymont at the University of Oxford. Southampton has two recruiting sites. One site is led by Professor Chris Kipps, Consultant Neurologist and Clinical Director for Research and Development at UHS and Professor of Clinical Neurology and Dementia at the University of Southampton. MARC is another site where the study is led by Dr Jay Amin, Consultant in Old Age Psychiatry at Hampshire and Isle of Wight Healthcare NHS Foundation Trust and Associate Professor in Old Age Psychiatry at the University of Southampton.
The couple are now waiting to see if Clive is eligible to take part in a Phase 2 clinical trial at MARC that will test whether a new drug can slow the spread of tau protein in the brain. In people living with Alzheimer’s disease, tau builds up in the brain and forms tangles, leading to cognitive decline.
Rita adds: “When we got the diagnosis, I thought ‘I am not taking this lying down’. We want to be part of the solution, to help those who have this in the future. But also, because the research community allows us to be part of something, to receive monitoring, and it helps us deal with things.”
“More research is desperately needed. There is a lack of focus on dementia research – 50 years ago, if you got breast cancer, that was pretty much it, but now, thanks to research, you have a much better chance of survival. It should be the same for Alzheimer’s disease.”
Throughout his diagnosis, Clive has remained positive and active. He says: “I was beginning to wonder what was going on but then they told me it was Alzheimer’s. I’ve found it helpful to keep doing things I am used to – to try and keep a routine. I’ve kept playing golf – it’s good for me to get out and keep it up and I’ve kept going to my Scottish Country Dancing class. I forget the steps sometimes, but people are really patient.”
