Using the Right Vocabulary with Dementia Patients

Sticks and stones may break my bones but names will never hurt me” – so goes the old saying, a child’s mode of defence against bullies in the playground.

But the fact is that words do hurt. Quite apart from obvious insults, language can be a subtle but insidious weapon – especially when it comes to older people.

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People with dementia don’t always have the ability to make witty comebacks to a “sticks and stones” remark. All the more reason to equip ourselves with the right vocabulary in the first place. Here is my advice:

‘She’s a wanderer’

It may seem an innocuous word but it’s a label and, as such, is disrespectful, because it totalises the person being talked about. Other similar words to avoid are “poor feeders” and “wetters”.

‘He’s losing his marbles’

Again, this is considered a lighthearted remark, but put yourself in that person’s position. Is this a kind thing to say about someone who is experiencing memory loss, confusion and personality change? For the same reason, words like “dippy”, “mad” and “demented” are offensive.

‘How long has he been suffering from dementia?’

People with dementia aren’t “sufferers”. Of course they suffer at times, but they don’t want dementia to define them. Instead of describing someone as a “dementia sufferer” or “dementia patient”, try using “person with dementia” or, better still, “person living with dementia”.

‘She’s an empty shell’

Actually, she isn’t. Not only is there lots going in that brain, but this makes the assumption that people living with dementia can’t feel pain or emotion. They can.

‘Where are you from, love?’

Beware of apparently friendly conversation. Asking someone with dementia seemingly basic questions such as where they live, where they were born or whether they’re married can cause them a lot of distress if they can’t remember. Instead, let them take the lead and don’t be afraid to enter into their universe. If they talk about their deceased wife as if she’s still alive, go with the flow and turn it into a chat. And don’t patronise people, by calling them “love”, “dear” or any other term of endearment. Use their preferred name.

Kate Swaffer, who has written about her own journey with dementia, has a few more tips on her blog:

  • Don’t remind people with dementia of the death of a loved one or pet.
  • Don’t talk about them to someone else in front of them.
  • Don’t say “I’ve just told you that”.

The stigma of dementia is learned. Children are frequent visitors to care homes, often visiting relatives, and communication comes naturally to them. We find that children, with no prejudice or preconceptions, talk openly, patiently and respectfully.

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For many of us, finding the right language to use around people with dementia – and other mental health conditions – is difficult. It’s so hard to negotiate that many people often don’t bother. But that’s not teaching anyone anything, nor is it building important bonds between people with dementia and their carers, care workers, friends and family.

One of my colleagues sums it up perfectly: “Labels are for tins, not people.”

Let’s start seeing the person, not the illness.

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