Gabriella Nelligan | 26 October 2021
Alzheimer’s disease is a progressive, neurodegenerative condition and the most common type of dementia, making up to 70% of cases worldwide (Fish et al., 2019). Contrary to popular belief, dementia is not a disease but an umbrella term for the series of symptoms caused by pathological changes in the brain resulting in problems with memory, mental sharpness, language, understanding and judgement (NHS 2021).
Whilst not a normal part of ageing, age is undoubtedly the biggest risk factor for Alzheimer’s disease, although genetic and environmental factors do contribute. With a global increase of life expectancy and, thus, an increasingly ageing world population, the prevalence Alzheimer’s disease is on the rise. For instance, the World Health Organisation estimates that global cases will escalate in increments of 10 million per year, resulting in an annual cost of £55 billion to the UK economy by 2040 (WHO 2020, Prince et al., 2013).
The cost of Alzheimer’s disease is not only economic, but also personally devastating – stripping patients of quality of life due to memory loss and cognitive defects in reasoning, judgement, and spatial awareness (Karantzoulis and Galvin 2011). Brain atrophy (i.e. ‘a loss of brain cells and/or a loss in the number of connections between brain cells’ (Kandola, A. 2020)) caused by Alzheimer’s disease also causes difficulty in swallowing, walking, and engaging in day-to-day activities (WHO 2020). In addition, because Alzheimer’s disease mainly affects older generations, there is a contemporary belief that the disease is just a ‘normal part of ageing’. However, many researchers have challenged this view (Alzheimer’s Research UK, 2021).
Changes in the brain in Alzheimer’s disease occur alongside an overproduction and deregulation of toxic proteins called amyloid-beta and tau. These proteins are vital for maintaining normal function of neurons, but when dysregulated they exert a toxic effect on the brain leading to synaptic and neuronal loss (Fish et al., 2019). Risk factors of Alzheimer’s disease include inherited genetic mutations, gender, age, and a generally unhealthy lifestyle. Smoking, being overweight, and other underlying health conditions such as diabetes, are also significant risk factors for Alzheimer’s disease (Alzheimer’s Society, 2021).
Altogether, life with Alzheimer’s disease paints a distressing picture, and the worst thing about it? There is still no effective treatment. Ever since Alois Alzheimer identified neurofibrillary tangles and amyloid plaques as hallmarks of the disease in 1906, the search has been on to combat these neuropathological events via pharmacological or gene therapies (Fish et al., 2019). Promising studies have included anti-amyloid and anti-tau therapies, as well as drugs targeting the associated neuroinflammation, however their efficiency has been unreliable (Panza et al., 2019). Nevertheless, the search pushes on, and government funding for dementia research has doubled from 2012 to 2015 – so there is hope (Department of Health 2016).
So, what do we do? An effective cure for Alzheimer’s disease is becoming increasingly urgent in today’s ageing population, but there is still a long road ahead. Therefore, in the meantime, we must understand and manage the disease, by developing new technologies such as GPS trackers to prevent dangerous wandering behaviours, and by raising awareness of the psychological distress the disease has on patients (Megges et al., 2018). By acknowledging the thought processes underlying Alzheimer’s disease, society can begin to understand the adverse behaviour from patients.
As a child it was scary to watch my grandma succumb to the disease, scary to see her forget our names and scary to see her get cross at times because she couldn’t understand where she was or what was going on. Whenever my grandma had visitors, she would tell them that her mother was coming to collect her shortly, even though her mother had been dead for decades. Although towards the end of her life she couldn’t hold a conversation, and if she laughed, she wouldn’t remember what she’d laughed about, the feeling of being happy still remained. It can be isolating for patients, and devastatingly sad for family members, but memory isn’t everything that makes a person, they can still feel loved without remembering who is loving them.
My own way to understand my personal experience with Alzheimer’s through my grandma was through educating myself. This eventually led me to attain an undergraduate degree in Neuroscience, and a master’s in research focusing on Alzheimer’s disease at Cardiff University. Throughout my education I have been incredibly proud to present, research and learn about Alzheimer’s disease and I hope to do the same for years to come. However, it wasn’t until my third year of university that I felt like I fully understood my grandma’s experience. During a lecture on schizophrenia the lecturer explained that people who suffer schizophrenic episodes experience a form of psychosis, unable to separate thoughts from reality. An example the lecturer used was one man with schizophrenia who would regularly believe that the clouds in the sky were tracking him as technology from the CIA. If you were to try and dissuade him from this perceived reality through reasoning by explaining the clouds were nothing to do with CIA, the man would become paranoid and upset. However, if you were to tell the man something about the clouds to make them less threatening but logical, such as today the CIA were not monitoring through the clouds, he would then understand. From this, I appreciated that my grandma could be in fact experiencing a form of psychosis, and that she truly believed her mother would come to collect her because she truly believed she was back at school. In fact, this is supported by a 2000 study of 329 Alzheimer’s disease patients by researchers at the University of California. Researchers found a cumulative incidence of 51.3% of hallucinations and delusions (psychosis) in patients by four years post-diagnosis (Paulsen et al., 2000). Therefore, there is no sense in trying to tell my grandma she is not at school and her mother has been dead for several years, because she won’t understand that in accordance with her own version of events. In this, I understood to be patient and agree with her, to conform to her version of events. In doing so, and avoiding contradicting or correcting her, I could also avoid distressing my grandma.
Public learning of underlying thought processes behind conditions such as Alzheimer’s disease could really help progress towards a societal understanding, and adaptation of spaces to be more dementia-friendly. With schemes such as Dementia Friends with the Alzheimer’s Society doing their utmost to implement this, things are looking positive for Alzheimer’s patients and their friends and families. An example of how we can learn to educate ourselves and become more understanding towards Alzheimer’s patients is an initiative being pushed by the Alzheimer’s Society to replace black mats at the front of high street shops with blue ones. This is because the large black area can look like a sizeable pit to an Alzheimer’s patient. Although not obvious to you or I, this can be quite distressing for patients, who sometimes refuse to enter or leave shops for what looks like no apparent reason. Other visual pitfalls include patterned carpets and plates, which may look like snakes or insects meaning the patient is unlikely to walk over patterned flooring or eat off patterned china (AlzLive 2021). By educating society on the experiences of Alzheimer’s patients, changes can be made to accommodate for nuances in the Alzheimer’s brain whilst waiting for that all-important cure.
To de-stigmatise the experiences of people with Alzheimer’s disease, we must firstly appreciate that Alzheimer’s disease is not a normal product of ageing, but a treatable and preventable disease, and secondly understand that Alzheimer’s disease patients psychologically undergo different thought processes. Therefore, although we wait eagerly for a cure for Alzheimer’s disease, in the meantime we must educate ourselves, and more importantly, understand.
Editors: Matthew Higgs, Ian Fox, Uroosa Chughtai.
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