Martin Robertson was diagnosed with a rare form of dementia, Posterior Cortical Atrophy, in 2016 aged 57. Since then, he has engaged heavily with the research field, seeing it as the route to a cure for this disease.
"When I was diagnosed, I was told I’d likely have five years before I’d need to enter full time care. That was eight years ago, and I’m still going strong. Back then, I’d gone to see my doctor because I was experiencing repeated one-sided headaches, amongst other things. He started a series of tests, and for a while I was poked and prodded quite a bit. One Monday evening, I went along to complete the Montreal Test – a paper-based set of questions. I scored 28/30, great! But when I was asked to draw two ‘infinity’ signs and link them together, mine ended up on opposite sides of the page. Nothing was showing up on MRIs, but I knew something wasn’t right. I’d noticed my driving had become terrible; my perception seemed to be all off… my wife was terrified to get in a car with me.
"In the end, I had to give up driving but that meant I also had to give up my job. Ironically, I used to work in day care centre for people living with dementia – but neither I nor the staff recognised my symptoms. We’d been trained on Alzheimer’s disease and Lewy Body dementia; those were the only types we really knew about. Plus, none of us knew that it could affect you under the age of 65. When I was diagnosed, I felt numb for about ten minutes. But when I got to the car, imagine the scene with Del Boy and Rodney where they’re laughing and jumping about so much that their three-wheeler rocks all over the place – I felt a bit like that! Finally hearing this diagnosis was a positive thing. I’d come out of the hospital with exactly what I’d gone in with, only now I knew what it was. I felt liberated – like I was now free to do what I wanted, when I wanted, if I wanted.
"Since then, I’ve got involved with an array of research projects – triggered by a very sudden urge to learn more about this disease, and what can be done to stop it. I wasn’t always this curious, it came on like a switch - academia runs in my family, but I always hated it. This feels different though, I’m doing something I enjoy. Amongst others, I’m involved with the Legends Trust and after my first piece of research, I found I had a knack for it. As time went on, I realised the way of life we all became accustomed to during the pandemic opened many doors. We live rurally, and I don’t have many friends or contacts nearby. Suddenly, Zoom and Teams calls connected me to a world of people I wouldn’t ordinarily have met.
"These technologies, in part, helped me obtain an Alzheimer’s fellowship with UCL. I’m now co-researching the way Primary Care Workers communicate with people who are living with dementia and how best to train them, so that we can give them a best practice toolkit.
"Some might say I’m not backwards in coming forwards - I’m certainly prepared to tackle the hard issues. That’s why I’m also involved in research on dementia and mental health wards – and how people with dementia are treated within them. I also do a lot of work with E-Credibles, University of Edinburgh’s body for societal research, and I’m a policy representative for Alzheimer’s Research UK.
"I choose to get involved to this extent because as a person living with dementia, I know the condition. I live with it 24/7. Medical professionals can diagnose, but they can’t live with it or experience it. Everyone with dementia is different – but we do share some commonalities, and some of those commonalities haven’t even been recognised yet. It’s important to me to learn as much as possible, and then to share what I learn. There’s also a selfish reason I participate– my brain needs it. My neurologist is happy for me to continue, even though I also do work for the Scottish Government and the NHS, so I have a lot going on. He advises not to overdo things but to carry on because the stimulation is what’s keeping me out of full-time care.
"People might think I’m a bit ‘sad’ for doing so much but I genuinely enjoy it. Others might enjoy playing golf, I enjoy this. There are so many real-life examples of people getting involved with research and enjoying it – and all the better, because it means that people who are living with dementia are narrated, and that’s so important.
You don’t have to be living with dementia to take part, but if you are, you can make such a valuable contribution. You can also do as much or as little as you want.
There will be a cure for dementia. Until that time, I’d like to see more people putting their skills to use as co-researchers, perhaps even conducting interviews as part of studies. That is something I’m doing, and as a person living with dementia, it feels groundbreaking. I’m also forging ahead with my mission to see more accessible language used when describing dementia.
"The crux of all of this is that dementia takes many forms. It affects people differently, and at different ages. It is not only an old age condition – and the more research we do, the more successful it is – and the more successful it is, the more people we can help – now, and in the future".