Alzheimer’s disease: misunderstood and misrepresented

Pictured: If you live to 85 or over you have a 1/2 chance of being diagnosed with Alzheimer's. (Source: Timothy K Hamilton via flickr.)

By Caragh Medlicott

We need to talk about dementia. Every four seconds worldwide someone is diagnosed with Alzheimer’s disease; it affects so many of us and yet our understanding of it is desperately lacking. It’s no secret that the media plays a huge part in shaping our understanding of, well, pretty much everything. The reality of the matter is that if something is repeatedly represented inaccurately then our own perceptions of that thing become equally warped and inaccurate. If there is one thing I am tired of, it is the use of dementia as some kind of dramatising plot device. I’ve seen it a million times, throw in a character with dementia to flesh out a story with a bit of grittiness or simply to further a tear-jerking agenda. That’s not to say there aren’t any accurate depictions of dementia, just that really they are few and far between.

There are multiple issues here; Alzheimer’s is a complicated disease. To begin with I should mention the distinction between Alzheimer’s and dementia as the two terms are often thrown around interchangeably. Dementia actually refers to a set of symptoms relating to cognitive brain function, memory and behaviour. The leading cause of dementia is Alzheimer’s and that is the context in which I’ll be discussing it, but it’s important to be aware that there are other causes for dementia too.

I think perhaps the biggest misconception socially is that Alzheimer’s is solely a memory loss disease. Of course, that is a big part of the dementia brought on by Alzheimer’s and often is one of the first symptoms to be diagnosed. However, it is also a physical disease. It causes huge damage to the brain –literally shrinking it- and lowers life expectancy. In researching this piece, I came across an article in Time which actually debates whether Alzheimer’s should be thought of as a terminal disease, with many experts defining it as ‘fatal brain failure’. Scientist Samuel Cohen says that lack of awareness is a huge issue when it comes to Alzheimer’s, he comments that people often think of it as simply a part of “getting older”. So how can we raise awareness? Well activism and charity, of course. But there is one other crucial way we can go about improving people’s perception of the disease: the media.

This is where representation comes in. We need screenwriters to be responsible with the ways they write about characters with dementia. There’s no doubt they should be included; considering that 40 million people worldwide are sufferers, it is simply realistic for characters with dementia to appear on our screens. What we need within this representation is an insight into the unique and varied ways Alzheimer’s is experienced by individuals and their carer’s. I think we’ve all seen the hyper-dramatised scenes (*cough* The Notebook *cough*) where a dementia sufferer no longer recognises a loved one. Of course, this is a deeply affecting, emotional moment which is not to be undermined, however, there are a plethora of stages which lead up to this. More often than not we see people with Alzheimer’s situated in care homes, which again, is often an inevitable end point for those with dementia but up to this point many people live at home, being cared for by partners and families. We rarely see this period (which usually spans a number of years) involving slow memorial deterioration. We don’t see the daily struggle of those with Alzheimer’s disease, the impact it has on relationships, the strain it can put on families.

One study by Alzheimer’s Research UK found that 68% of people think they would be a different person if they were diagnosed with dementia. To me, that signifies something massively wrong in our societal understanding of this disease. It suggests that the general public think of dementia as something which takes away your identity, and that is damaging. It makes it scary and alienating to the thousands of those who are diagnosed each year. It can even lead to people being afraid to share their own diagnosis with friends or loved ones for fear of how they’ll be treated. I don’t think it’s a stretch to say that by only representing the latter, more “dramatic” (so to speak) stages of Alzheimer’s the media is damaging the public perception. This isn’t to say it should be removed, but simply that what is shown should be more comprehensive and varied. We need to see the day-to-day. We need to see the frustration –of both sufferers and carers- so that people are understanding of this emotional response which is actually extremely common. I spoke with a relative who cares for a close family member who is in the early stages of dementia, she told me: ‘Having a loved one diagnosed with dementia is difficult. It’s not just being forgetful now and then, it’s the same conversations every day, not being able to communicate like you once could, not being to tell them about your day to avoid confusion, you feel angry at yourself for being frustrated with them.’The initial stages of dementia, which usually manifest as short term memory loss or difficulty following longer trains of thought, are rarely depicted.

Dementia currently costs Britain around £11 billion a year – (a figure set to rise in the future)- while cancer costs Britain a comparatively smaller £5 billion. Despite these statistics dementia research receives 13 times less funding than cancer research. This isn’t to suggest any one disease deserves more funding than the other, but that the public perception of Alzheimer’s is detrimental to the attention it receives. At the end of the day, no disease is ever going to be easy to deal with, but by raising awareness of the prevalence of Alzheimer’s and representing it with accuracy we can make a real difference.

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