A month ago a video went viral, asking everyone to #ShareTheOrange. It was created by Alzheimer’s Research UK, UKs number one fundraising charity for dementia research. It manifested curiosity, begging the question “What does an orange have to do with dementia?” As the intricately crafted video states, dementia is most commonly caused by Alzheimer’s Disease which physically destroys brain cells. Put aptly, “the destruction of Alzheimer’s can leave a brain weighing 140g less than a healthy one- that’s about the weight of an orange”.
I watched it while leaving London, reflecting back on three solid days of dementia dialogue at the ARUK Annual Research Conference or #ARUKconf. With dementia being the leading cause of death in the UK, ARUK has been striving to do for dementia what scientific breakthroughs have thus far done for cancer. This occasion, UKs largest dementia conference, convenes as part of that effort and I attended due to opportunities to showcase a poster and present on the ‘Barriers and solutions to recruiting ethnic minorities to dementia research‘. But today I’m recounting the highlights, not just about research but also being in the shoes of someone with dementia.
The conference spanned over an Early Career’s Day and two Main Conference days and consisted of PhD student talks and my overhearing “have you heard about our Lord and saviour tau?” My favourite talk demonstrated the underpinnings of dementia in everyday activities and objects within a “kitchen lab” and how they become increasingly unfamiliar and impossible as dementia progresses. In the mix we had an elevator pitch exercise designed to convey our research in 30 seconds and for a brief moment the technicalities of my fellow conference goers work, about animal models, cellular functions and genetics, made sense.
Formal talks I enjoyed discussed supporting people effected by dementia as they can go on living with it for years, with over 21 million people in the UK knowing someone with dementia. The focus was improving quality of life and promoting independence through meaningful activities, music, physical health, punctuality, routine, social engagement and cognitive stimulation and rehabilitation. There was discussion on communication through shorter sentences and nonverbal cues, utilising visual stimuli and consideration on the impact on carers and their higher rates of depression and anxiety coupled with anticipatory grief and loss.
Dr. Ashwin Venkataraman provided a clinical perspective, discussing the heterogeneous nature of subtypes of dementia, rife with comorbidities that complicate diagnosis. The most important aspect of this process, he stated, was clinical history. Not just an assessment of cognitive domains but insight into daily activities, eating habits, mood, motivation, personality, sexual behaviour, sleep routine and incidences of anxiety, depression and psychosis. This could take from 10 minutes to an hour. Dr. Venkataraman also talked about examination and head turning; he observes the person suspected with dementia when they answer questions to see how often they look to the person who came with them to confirm their answers. Other signs are how vague their recollection of recent news is and uncertainty about routes they may have taken.
There were also introductions to the organisations and networks operating in the dementia sphere. Dementia Researcher, a newly formed network, bridges dementia experts and novices with essential tools, support, resources, forums, career advice, job opportunities, blogs and podcasts. Join Dementia Research accelerates patient and participant recruitment in ongoing studies, allowing people to register their interest in dementia research and volunteer. The MRC has also launched Dementia Platform UK to improve access to data by being the world’s richest source of participant data and data sets, collaborating with over 40 cohorts.
These organisations and more had designated stalls and by far the most engaging was ARUKs own. They had guides for talking to the media and enhancing science communication, reference to their Stats Hub, and their own virtual reality experience. A Walk Through Dementia is ARUK, Visyon and Google’s brain child, developed through focus groups of those with different types of dementia to curate a walkthrough using Google Cardboard that shows what its like to have dementia.
With giant headphones and a phone to my face I was walking a suburban street, following a loved one who turned out to be a stranger as almost imperceptible changes fluctuated across their face. I felt motion sickness and accidentally wandered, disoriented, a few feet away from the stall. A fast paced heartbeat pounded my ears along with confused anxious thoughts, punctuated with self doubt. The footpath swayed with puddles looking like black holes one could drop into and I could not perceive the depth of steps leading up to my house as the street grew eerie and alien.
As with any conference I left updated and informed on the latest research and armed with literature to catch up on amidst pens, notebooks and funnily enough, a stress ball. But with experiences like this I learnt so much more about actually living with dementia.