From a young age, I’ve always been fascinated by science and research – you are constantly learning new things and you are genuinely creating new knowledge. Fair enough, not as ground breaking as finding new chemical elements or designing a new vaccine against the virus that has flipped all our lives upside down. But, even small new pieces of knowledge can be meaningful to those that are actually affected by a condition – such as dementia.
When I was say 15 and starting to think about which avenue of science to pursue at University, I certainly wasn’t thinking about dementia. The one subject I had been drawn to most was psychology – understanding why humans do the things they do, how humans develop, and how the brain affects our behaviour, emotions, but also helps us remembering.
Psychology wasn’t taught at my Gymnasium (one type of high school in the German high school system), but I was particularly drawn to all those mind-blowing human (and really unethical!) experiments from Stanford’s prison experiment to Milgram’s experiment in my sociology class.
Fast forward a few years, a Bachelor in Psychology behind me, and I wanted to truly understand how the mind works. That is – how do we remember things? Why does the brain sometimes not work properly? And how can something going wrong in our brains affect so many aspects of our lives – from getting agitated and aggressive to being unable to make a cup of tea or a hot meal?
As part of my Masters at Leeds, where I was trying to be able to answer these questions, I was starting to do my first research project with people living with dementia. Specifically, I conducted a little experiment comparing memory recall in people living with early-stage dementia and healthy adults. Absolutely fascinating first insight into designing my own experiment, and understanding how memory fails some of us sadly. This has made me want to understand better just how poor memory can affect our daily lives.
Since the last year of my undergrad, I was lucky enough to secure a casual researcher post at Manchester, which very quickly turned into a part-time job, where – yes, you may have guessed it – I was interviewing people living with dementia, unpaid carers, and care staff. So that was even before my Masters, but it all worked together in making me want to pursue a career in dementia research.
I will never forget one particular couple I interviewed as part of this large European study I was working on. The wife had dementia, and the husband was so confused as to how his wife could leave her glasses in the fridge. Or leave the iron on when she left the room and forget all about it. And suddenly wasn’t able to make a cup of tea anymore. He was upset and confused how this could happen – his wife never used to do these things. It was the dementia obviously.
I may not remember their names, but I won’t forget the setting and him expressing his emotions over all these changes going on with his wife. If I had to pin down a particular moment, I’d say that was one of the moments, amongst many other reasons why I became interested in the field, including my great-grandfather having developed dementia in his care home a few years later.
So both my studies till then and my work experience have helped me pinpoint where exactly I wanted to be – so it was a PhD at Manchester next.
As I said at the beginning, science and research have always held something incredibly fascinating for me. But what’s the point in doing research and it just stays in the research bubble? I wouldn’t have nearly the same levels of motivation I have for what I am doing now if my research would not somehow, even in a little way, have the potential to actually impact on people’s lives. Research is a very powerful tool if used correctly. It can help to genuinely improve people’s lives and raise awareness of issues which need to be addressed in order to create a more equal, just, and fair society – a society where everyone can access the same health care and get the right level of support they need. Sadly, that’s not the case for dementia care. And even worse, it seems like the pandemic has exacerbated some inequalities in getting the care people need. But that’s something for another blog.
One thing to remember though is that there can be many ways which may attract you to join us dementia researchers. There is certainly plenty still to be done, and hopefully my little story of why I became involved in dementia research has highlighted to you some reasons why it’s a great job and great field to be in.
Dr Clarissa Giebel is a Research Fellow at the University of Liverpool and NIHR ARC North West Coast. She has been working in dementia care research for over 7 years focusing her research on on helping people with dementia live at home independently for longer.
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