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| Dementia is a terrible word. Why do people still use it? | Dementia is a terrible word. Why do people still use it? |
| (4 months later) | |
| It’s important to get an early diagnosis but the word is offensive and takes power away from people | |
| Jason Corner | |
| Sat 30 Sep 2017 09.45 BST | |
| Last modified on Sat 30 Sep 2017 09.46 BST | |
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| Dementia is a word with a horrific impact. | Dementia is a word with a horrific impact. |
| I’m talking about the word and its origins, not the disease. I have observed people living well with dementia and this antiquated and negative term belittles the contribution to society that they can make. I am in my third year of a PhD and my research is based in care homes where I get to observe good care that challenges, includes and promotes a sense of purpose for residents with dementia. Before this I worked as a community nurse. | I’m talking about the word and its origins, not the disease. I have observed people living well with dementia and this antiquated and negative term belittles the contribution to society that they can make. I am in my third year of a PhD and my research is based in care homes where I get to observe good care that challenges, includes and promotes a sense of purpose for residents with dementia. Before this I worked as a community nurse. |
| One of my duties as a community nurse was to assess people for possible dementia, then discuss with a consultant and return to the person with a diagnosis. “You’re not taking me to the funny farm are you?” is something that I would hear with alarming frequency at initial appointments, or, “I’m not going to the (psychiatric) hospital am I?” was often asked. I would spend an hour trying to reassure the person and let them know that was not my intention. Most people would be happy to discuss their symptoms in terms of the physical changes to their brain, acknowledging: “my memory isn’t as good as it used to be”. However, when the conversation progressed and term dementia was used, I could feel the tension building in the room. | One of my duties as a community nurse was to assess people for possible dementia, then discuss with a consultant and return to the person with a diagnosis. “You’re not taking me to the funny farm are you?” is something that I would hear with alarming frequency at initial appointments, or, “I’m not going to the (psychiatric) hospital am I?” was often asked. I would spend an hour trying to reassure the person and let them know that was not my intention. Most people would be happy to discuss their symptoms in terms of the physical changes to their brain, acknowledging: “my memory isn’t as good as it used to be”. However, when the conversation progressed and term dementia was used, I could feel the tension building in the room. |
| I now believe I was using the wrong language. I thought the prefix of dementia, de, was related to the prefix of degeneration, one of the key components of dementia. It was only in my first year of my PhD that I began to read the history of dementia and the origins of the word. De means depart from, mens – the mind. How offensive. | I now believe I was using the wrong language. I thought the prefix of dementia, de, was related to the prefix of degeneration, one of the key components of dementia. It was only in my first year of my PhD that I began to read the history of dementia and the origins of the word. De means depart from, mens – the mind. How offensive. |
| I believe that an early diagnosis of dementia is important – it should be empowering. We could learn from cancer initiatives where cancer is personified into a beatable entity, and community groups get together, dress in pink and have a dramatic personal and social effect. We aren’t as provocative when it comes to dementia – why not? | I believe that an early diagnosis of dementia is important – it should be empowering. We could learn from cancer initiatives where cancer is personified into a beatable entity, and community groups get together, dress in pink and have a dramatic personal and social effect. We aren’t as provocative when it comes to dementia – why not? |
| Some people with dementia might have difficulty advocating for themselves, or rather, others might struggle to understand their communication of who they are and what they want as a group and as individuals. When it comes to dementia, we have a societal listening disorder. | Some people with dementia might have difficulty advocating for themselves, or rather, others might struggle to understand their communication of who they are and what they want as a group and as individuals. When it comes to dementia, we have a societal listening disorder. |
| Some may think it’s just a word. But the word removes power from the person at the point of diagnosis and it has an impact on the stance of the people who interact with them. “They’ve departed from their minds, we’d better take over.” | Some may think it’s just a word. But the word removes power from the person at the point of diagnosis and it has an impact on the stance of the people who interact with them. “They’ve departed from their minds, we’d better take over.” |
| I spend hours teaching undergraduates to use established theoretical models to understand the whole person: their biography, their health, their personality, their social preferences. Such models help professionals working with people with dementia. | I spend hours teaching undergraduates to use established theoretical models to understand the whole person: their biography, their health, their personality, their social preferences. Such models help professionals working with people with dementia. |
| We’ve been using the word so long that its part of the public discourse. We no longer see it as negative. It is perfectly acceptable to call otherworldly demons “dementors” in Harry Potter. But if dementia is fine to use, why wouldn’t you use the word demented? Why does one suffix get me the sack from my job as a nurse, while the other is common language that we try to impose on people already feeling panicked about their loss of role, purpose and the way the community regards them? | We’ve been using the word so long that its part of the public discourse. We no longer see it as negative. It is perfectly acceptable to call otherworldly demons “dementors” in Harry Potter. But if dementia is fine to use, why wouldn’t you use the word demented? Why does one suffix get me the sack from my job as a nurse, while the other is common language that we try to impose on people already feeling panicked about their loss of role, purpose and the way the community regards them? |
| What’s the alternative? The Diagnostic and Statistical Manual of Mental Disorders fifth edition (DSM V) has renamed dementia as major/minor neurocognitive disorder. Too convoluted? Nonsense. For many years we have referred to multiple sclerosis as MS or a transient ischaemic attack as a TIA. Don’t people with major or minor neurocognitive disorders deserve a more scientific term that at least goes towards explaining their condition, rather than informing them they are departing from their minds? | What’s the alternative? The Diagnostic and Statistical Manual of Mental Disorders fifth edition (DSM V) has renamed dementia as major/minor neurocognitive disorder. Too convoluted? Nonsense. For many years we have referred to multiple sclerosis as MS or a transient ischaemic attack as a TIA. Don’t people with major or minor neurocognitive disorders deserve a more scientific term that at least goes towards explaining their condition, rather than informing them they are departing from their minds? |
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