Although dementia affects around 50 million people worldwide, according to the World Health Organization, there are many misconceptions around the disease. This can lead to frustrations on the part of the people with the disease, carers, and relatives, alike.
Overcoming the myths and stereotypes related to dementia is important if you want to improve the quality of life and the strength of relationships. So, we set out to explore these misconceptions, and how can we work together to break these stigmas.
What is dementia?
A good way to start learning about dementia is to look for the facts. The latest figures from The Alzheimer’s Society reveal that 850,000 people are currently living with dementia in the UK. That’s by no means a small number.
Then there’s the term “dementia” itself. Do we mean Alzheimer’s for instance? As Dementia UK clarifies, dementia in the “umbrella term” to describe more than one progressive neurological disorder. There are more than 200 subtypes of dementia, including Alzheimer’s. In terms of what these diseases have in common, they are all a result of damage to nerve cells in the brain. This can affect people in a whole range of ways, and everyone’s experience of the disease is different.
Myths and stereotypes related to dementia
If that already comes as news to you, you may be wondering why we have certain fixed ideas about dementia. If it’s not commonly known that there are more than 200 subtypes of the disease for starters, how can we collectively have such a clear idea of how the disease impacts people?
This brings us round to the misconception part of the disease. There are a few overarching themes that are extremely damaging for both dementia patients and their loved ones. Here are some examples of common myths and stereotypes related to dementia:
- They’re not all there – people are currently campaigning against the use of negative language around dementia. In the past, it was common to say things like, “they’re away with the fairies,” or, “they’re not all there.” Saying things like this is damaging to perceptions. As we’ve highlighted, not everyone experiences dementia in the same way. It also trivialises the reality of people affected by dementia.
- Dementia isn’t fatal – the symptoms of dementia vary depending on the cause, or subtype. Some are reversible, others are progressive. Symptoms can affect both the brain and bodies. Some causes of dementia can be fatal. An example is the rare Creutzfeldt-Jakob disease. Other late stages of dementia can lead to medical complications such as pneumonia and infection, which in turn can lead to death.
- It only affects old people – Dementia can affect people of all ages. If you have dementia and you’re under 65, it’s defined as young onset dementia or YOD. There are 42,000 people with YOD in the UK. If you work back to our figures for dementia at the beginning of the article, this means that around 1 in 20 of dementia cases in the UK are early onset.
- You can’t look after themselves any longer – it’s true that memory loss is one of the most common early signs of dementia. This can lead people to think that everyday tasks, like continuing to work, or managing finances, are impossible. This isn’t necessarily the case. Again, it’s worth repeating that everyone experiences dementia differently. The important thing is to take it on a case by case basis and find the right support to continue living life to the full.
The issue of stigmas
To approach dementia with confidence and positivity, the stigmas around it need to be removed. We’ve talked about negative connotations and misconceptions. But there are other issues at play too.
The Alzheimer’s Association talks about overcoming stigma and the ways in which these stigmas affect people with the disease. It includes things like preventing people from seeking medical treatment, getting a diagnosis, or making plans. You can see how from a medical point of view this could be problematic. Early diagnosis and treatment can make all the difference in the face of dementia.
What it feels like to be a victim of these stigmas
Aside from the practical, medical help needed, there are also the social and self-esteem issues that arise from stigmas. It can put pressure on relationships or change family dynamics. Things, like not knowing how to speak to someone with dementia anymore, avoiding talking about it, or bypassing the person with dementia to discuss important issues, are common.
This, combined with ignorance over the disease, negative language and insensitive jokes around dementia can quickly leave a person feeling alone, and neglected.
What we can do to help those with dementia
The good news is that we can all do something to both overcome these stigmas and maintain our lives and relationships in the face of dementia. Getting your facts straight and debunking the myths and stereotypes related to dementia is the first step. And remembering that each experience is different is key here.
If the disease is impacting daily tasks, such as bathing or making a meal, practical solutions around the home can help. Those include wet rooms, stairlifts, modifications in the kitchen, walk-in showers, or walk-in baths.
Modifying our environment may be one important step to managing dementia, but it shouldn’t stop there. Building up our confidence in talking about the facts and getting support where we need it is a huge part of the puzzle.
As The Alzheimer Association points out, it’s about staying positive, and being “part of the solution.” That goes for those with dementia, their family, and friends. Through better understanding the facts that relate to your subtype of dementia and continuing to talk about the experience you’re all having in light of it, you can work towards a brighter future.