Language is powerful. More powerful than most people recognise. Not only does it serve as a communication tool, but it also frames our cultures and our beliefs. The vast majority of people simply don’t know how we should talk about certain topics and are genuinely surprised when they realise they have made a faux pas. Only by educating people in what words they should and should not use can we help to effect change, not only in the way people talk about dementia, but also in the way the wider community thinks about it.
We love this quote from a report written by the Alzheimer’s Society:
“After all, the words we use affect the way we think, and the way we think affects how we behave. The language we all use has the power to impact the lives of millions of people around the country.”
By ensuring the language used to talk about dementia is correct, we can work towards putting an end to the stereotypes, stigmas and myths that also surround it. While dementia is life-changing, and can be challenging and stressful for those living with the condition and those supporting them, we truly believe people don’t have to languish with dementia, so we want to hear positive, inclusive language used that empowers, respects, values and treats people with the dignity they deserve.
People with dementia aren’t victims
We have to remember that each person living with dementia is an individual with a history, a personality, a character – they are not defined by dementia. Instead of talking about someone with pity, referring to them as ‘sufferers’ or ‘victims’, we should use more positive terms that state the facts, such as:
A person living with dementia
A person affected by dementia
A person with dementia
And remember, depending on what stage of dementia the person is at, you can always ask them what they prefer. And, given that there are different forms of dementia, people may choose to identify with one specific one, such as Lewy body dementia or vascular dementia.
Dementia is not a disease
Dementia is a set of symptoms caused by diseases that affect the brain. One such disease is Alzheimer’s, but there are many more. But dementia itself isn’t a disease or an illness, so it shouldn’t be referred to as one. Instead, we like to use ‘condition’.
Call people people
Sadly, we often hear people living with dementia referred to as ‘patients’, ‘residents’ and ‘clients’. While these may be appropriate in certain settings such as in hospitals and with solicitors, they shouldn’t be used in general terms.
We don’t like to hear care homes referring to their ‘residents’ as it creates a hierarchy and sense of temporary status. We much prefer hearing them talk about the ‘people that live with us’, which creates a lovely sense of community and inclusivity. At Plan with Care, we avoid using the word ‘clients’ where possible but rather the ‘people we support’ or the ‘people we work with’, as we see it as a collaboration to achieve the best for each individual person.
Distressed, not difficult
When referring to a person who is experiencing a change in behaviour, remember that behaviour is often an expression of needs not being met. Maybe the person is in pain but can’t communicate it. So when you refer to the behaviour, use the correct terms… the person is not being ‘difficult’, they are ‘distressed’. If you do use ‘challenging’, make sure it’s in reference to the individuals finding the situation ‘challenging’ and not how you’re describing the person themselves.
Also avoid labels like ‘a wanderer’ or ‘a shouter’. This is impersonal and, again, omits finding the reason for the behaviour. ‘Wandering’ gives the idea of strolling aimlessly, when, in fact, a person could be walking about with a purpose that is unknown to you.
You’re supporting, not doing
A large part of why we should be careful with the language we use around dementia is that we should always be thinking of how a person feels when they hear what we’re saying. Think of the difference between ‘John needs feeding’ and ‘John needs support with eating’, or ‘Katherine needs washing’ and ‘Katherine needs a little help with washing’. The second options are much more positive and active and don’t passively refer to the person as if they were a child.
The main aims of using the correct language around the topic of dementia are twofold: we empower the individuals living with dementia, putting them first, building self-esteem and including them in the conversation; and we also work to change the view of dementia in the wider community. For people to truly learn about a topic, it has to be talked about in the appropriate way.
If you’d like to read more on this subject, we really recommend the report mentioned above by the Alzheimer’s Society: Positive language: An Alzheimer’s Society guide to talking about dementia. And, of course, if we can help in any way, then please feel free to get in touch.