My grandma is an incredible woman. Only 4’10”, she was a formidable hiker and gardener, a nursery-owner who spent much of her later life caring for her own mother who lived to the age of 104. For years she lived alone in her beige Yorkshire bungalow, which I would visit with my family for occasional weekends. With no wifi or computers on the premises, the adults would play round after round of Scrabble while my cousins and I rifled through mountains of tennis rackets in the workshop, or found new ways to play hide and seek. These were lovely times, where we were forced to relax and succumb to her hosting in the quaintness of an English town.
Unfortunately, while I remember these days fondly, my grandma does not. It’s not that she looks back on these times with anger or sadness; she doesn’t look back at all. She wouldn’t even be able to point me out in a crowd. This is because she is one of around 944,000 people in the UK living with dementia1, in her case Alzheimer’s disease characterised by memory loss. When we visit the care home where she has lived for the past 4 years, she may seem to recognise my dad (her son) and vaguely understand that we are people who love her, but is unable to hold any information or even a conversation. The awful truth, too, is that we’re expecting news of her death any day now: she’s stopped eating and drinking as her condition has removed her understanding of hunger cues and routine. She’s fading away both mentally and physically right before our eyes and there’s nothing we can do to help her.
Importantly, though, she seems happy and not distressed by her current situation. That is too often the cruel irony of dementia, where the person forgets that they have lost their memory, leaving their loved ones to witness their disassociation from reality and slow deterioration. Unfortunately, my grandma also experienced this aspect of the condition as her husband, my grandad, was diagnosed with early onset dementia at the age of 64, years after he first displayed symptoms. While she was able to care for him for much of his remaining life, he moved into a care home in 2012 and died a few years later. I don’t remember him much, as his memory was deteriorating before I was born, but I do remember how his condition affected my parents and uncle.
Without wishing to sound overly dramatic, these experiences of dementia within my family have in many ways shaped my life. I’ve been exposed to the stress a chronic or terminal condition can place on an individual and community, and the intricacies of a healthcare system that can support - or fail - them. In my application to study medicine at St Andrews, I cited witnessing their care as “my introduction to medicine”, and explained how the differences in their related conditions “demonstrated the uniqueness of the human brain”, sparking my interest in the nuances of human biology. I believe it’s also shaped my attitude towards life itself, as knowing that your mind and memory may one day fail forces you to appreciate how ephemeral our experiences are. In my case, one of the greatest terrors of dementia is always in the back of my mind: the relatively unknown causes and the genetic factors linked to it, especially when considering early-onset cases. It may one day affect me even more closely.
Against this backdrop, I knew when considering applying to the Laidlaw Programme that I wanted to conduct research I felt was important not just in a societal context, but on a personal level. I wanted to contribute something of interest to an academic audience alongside learning more about a topic that has affected me in such a significant way. Introduced to my supervisor through a pre-defined project that already had too many applicants for me to be taken on, I became interested in a self-defined project when he suggested that I could in some way incorporate the UK Biobank into my research. This is a fascinating tool: a database containing the health records, biological samples and lifestyle information of 500,000 UK volunteers, established in 2006. It’s used by thousands of researchers to establish relationships between exposures and outcomes, and due to the age range of the sample population (40-69 years at the time of recruitment), it’s become a valuable tool for dementia research.2 The proposal was that I could research how useful this resource has been so far in investigating causes of dementia, in particular those that may be modifiable, producing a literature review that would also give me skills needed when it comes to writing my dissertation in the future.
The highlight of my research came in the first week, when I was able to attend the Evidence Based Early Diagnosis conference 2024, run by my supervisor. Spending three days with an international cohort of academics discussing the benefits, risks and future of diagnostic tests and over-diagnosis was fascinating not just for the insight into their careers and the world of academia, but also because it placed their research in a wider context, that of policy. The research that they were discussing had the potential to influence the decisions of future politicians and by extension society, and I was really struck by the real-world application of work that can often feel so abstract and niche. With this insight, it’s inspiring to be delving into a new resource and exploring its potential around a subject so close to home.
Of course, this personal connection to my research topic comes with a risk of bias, where I may be driven to view sources in a particular way or approach my research from a specific angle. I’m aware of this, however, and am trying to be as fair and evaluative as I can. I care about what I’m investigating, and the past six weeks have been an incredible opportunity to learn about the world of research and its potential impact on a societal and personal level. I’m excited to be going into medicine, where I can directly engage and positively impact people’s lives, and this has been enhanced by my increased awareness of the research backing and driving change in how we deliver care. With my grandma reaching the end of her life, I’ve become better acquainted with the intricacies of her condition and reassured by the quantity and quality of work that is going into ensuring fewer people have the same experience in the future.
References
- NHS. (2023, July 20). What is dementia. Nhs.uk. https://www.nhs.uk/conditions/dementia/about-dementia/what-is-dementia/
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UK Biobank. (2024, June 24). About us. Www.ukbiobank.ac.uk. https://www.ukbiobank.ac.uk/learn-more-about-uk-biobank/about-us