Home | Blogs | It’s the disease talking: The dehumanization of people living with dementia

It’s the disease talking: The dehumanization of people living with dementia

idea.nottingham.ac.uk image: Dementia Day to Day blogs banner

Topics: 
approaches to dementia care, communication

Metaphors help us make sense of the world. When someone says “life is a rollercoaster,” we think of the wide range of emotions and situations we encounter in our lifetimes. Similarly, when we hear that someone “is a shining star,” we think of his or her talents and successes. But metaphors are not always useful. In fact, they can be harmful because of the way they frame things. Metaphors have the ability to highlight certain attributes while hiding, or even misrepresenting, others.

When we speak about refugees and say that “they are flooding our shores,” we are not only saying that they are arriving in large numbers, but also that they represent a danger to our country and to our people. They are “a flood,” a threat with the potential of destroying our homes and killing us all.

The medical field provides good examples of how metaphors can be particularly damaging. Although a metaphor like “she is battling cancer” can help us understand and cope with the process of recovery, it also frames this process as a war in which any treatment, even the most toxic one, could be justified. People in advanced stages of cancer are put through devastating chemotherapy treatments even when the chances of cure are very slim. Yet, such toxic treatments make sense because they are framed as part of a “war.” And as they say: “all is fair in love and war.”    

In her book AIDS and Its Metaphors, Susan Sontag argues that the way people talked about AIDS during the crisis, and the metaphors they used, made the disease even worse. “Of course, one cannot think without metaphors. But that does not mean there aren’t some metaphors we might well abstain from or try to retire,” Sontag wrote.

People living with dementia tend to speak their minds. But sometimes their honesty can be hurtful. When I was caring for my mother who had dementia of the Alzheimer’s type, people used to tell me not to take to heart anything bad she might say. “It’s the disease talking,” they used to say. And although I knew they meant well, their words bothered me a great deal.

I started thinking about what made me so upset and realized that it was not only the idea of depriving my mother of her own words, but especially the fact that she was being dehumanized. Her human condition, characterized by her ability to talk, was being taken away from her by the metaphor and given to the dementia: “It’s the disease talking, not her.” But diseases don’t talk, humans do. In fact, humans are the only living beings who can talk. Speaking is a trait that is unmistakably human.

Then I started noticing that the metaphor was everywhere. On the website of a well-known nonprofit organization aimed at informing and helping caregivers, I found the following quote: “Accept changes. Keep in mind that the changes you see and hear in your loved one are a result of the disease, not of your loved one trying to be difficult or hurtful. When your loved one says inappropriate things, remember it's the disease talking. Try not to take it personally.”

I became very interested in finding out how prevalent the metaphor was. So I created a profile of a fictious caregiver in a social media group focusing on dementia, and posted an ad asking for advice. My purpose was to determine if the ad would trigger the metaphor “it’s the disease talking.” The ad read as follows: “Help please: I am spending the summer with my grandmother, who has Alzheimer's, so that my parents can travel together. Unfortunately she doesn't always recognize me and often insults me. This hurts my feelings so much. How do you cope with the pain of being called names by your loved one? Thanks a lot.”

Out of the twenty comments generated by the ad, nine were comments giving practical advice (for example, “play music for her when she becomes agitated like that”). However, out of the remaining eleven comments, the majority (seven) contained the metaphor “it’s the disease talking.”

In addition, a quick search of the phrase “It is the disease” (or “It’s the disease”) in the page of the group, revealed that it had been used a total 78 times since the creation of the group. In two-thirds of the comments, the phrase was used as the actual metaphor. But in one-third of the comments, it was used to challenge the use of this metaphor (for example, “when someone says it’s the disease, not him, is that supposed to make me feel better?”). Finally, a wider search on Google showed the phrase being used more than 25,000 times.

It is clear that the metaphor “it’s the disease talking” is widely used. Like other metaphors, it allows us to understand complex things or cope with challenging situations. However, the metaphor also has the ability to hide or misrepresent. When we say “it’s the disease talking,” we humanize the disease but at the same time dehumanize the person living with the disease. The metaphor not only reinforces the stigmatization of people living with dementia (“they don’t make sense”), but contributes to their isolation (why call them? Why visit them?). The metaphor “it’s the disease talking” hides key human qualities that the person may still have (like interacting, talking, or expressing feelings), and prevents the caregiver from finding out the real reason behind the challenging words or behavior.

Dehumanization, as we have seen over and over in history, makes it easier to commit and justify abuse. And this happens because the people being dehumanized are no longer seen as worthy of human dignity. So when my mother was alive, I always preferred to acknowledge that it was her who was talking, even though most people around us preferred to believe that it was the disease.

 

Your comments

You'd be very welcome to leave a comment on this blog post. 

Your comment won't appear straight away as we'll need to check it first: thank you for your patience.

When leaving comments please bear in mind our posting rules.

metaphors

I really liked this well observed piece, thank you. I saw a lady with dementia yesterday in a care home. She was loud and cantankerous, critical of the staff and all they were trying to do for her. After a few minutes she told me that I was not like a real doctor, and shortly after that she stopped speaking to me altogether and turned away to signal that the conversation was finished. Her demeanour may have been different from how she might have been before she had dementia but, to me, it didin't feel like the disease talking, it felt completely authentic and an apt reflection of her current confusing (and probably scary) world. I greatly admired her spirit in the face of it all.

Add new comment

CAPTCHA
This is for testing whether or not you are a human visitor and to prevent automated spam submissions.

See more like this

Sally

In my simplistic, layman's mind, I visualise my husband’s particular, mixed dementia as a huge, underground labyrinth of long, dark, mysterious, twisting tunnels. This disturbs me greatly, particularly perhaps because I am severely claustrophobic.

Karen Harrison Dening

I recently attended an international research workshop that aimed to elicit the views of attending ‘experts’ in the field of dementia research and care.  The focus of the workshop was to explore methodology that examined the receptivity of ‘early diagnosis of Alzheimer’s disease’ across various s