Letters: Why language matters when talking about dementia

We are hot off the heels of Dementia Awareness Week in Scotland, a fantastic initiative pioneered by Alzheimer Scotland that aims to raise awareness and educate people about dementia.

For us at Viewpoint, a charity that provides supported housing and care services for older people, it was fantastic to see so many positive stories make their way into the headlines throughout the course of the week. We even made the news ourselves following the launch of our new dementia strategy.

But among the positive stories, one thing was clear. There is still a misunderstanding around how to appropriately talk about dementia.

It was the Dementia Engagement and Empowerment Project that created “Dementia Words Matter”, a guide written by people with dementia that sets out the words and descriptions they would prefer were avoided. These words and phrases include the likes of “sufferer” and “victim”, and are referred to in the guide as “curl up and die” phrases – ones that the participants said make them physically flinch when they heard or read them.

However, a simple change to the language we use can make all the difference to how those living with dementia are made to feel. At Viewpoint, we have worked hard to ensure that everyone, from board members to carers, is using the correct terminology when speaking about dementia. Instead of the term “sufferer”, for example, we prefer to use the term “living with dementia” as this recognises the individual and not just the illness.

It is fair to say that many people may not be aware of the sensitivities around how we talk about dementia. Most people will not know that phrases which fall under the “curl up and die” category create negative stereotypes and cause distress and anxiety. And not just to an individual, but also to their loved ones, too.

Having a loved one diagnosed with dementia can be an immense struggle for families. In some cases, it can become a hugely complex and stressful ordeal plagued by feelings of sadness and guilt.

At Viewpoint, we have seen many family members express their upset at terms like “sufferer” because, put simply, it reinforces their fears.

And then there are carers who devote their lives to creating a loving, safe and supportive environment for residents living with dementia. Negative phrases and descriptions of dementia make them feel helpless and that they are incapable of making a meaningful difference. This is just not true. Our carers at Viewpoint have a hugely positive impact on the lives of our residents living with dementia.

But there’s more to language than just ensuring that we do not cause distress or upset. If we change the way we talk of dementia, it could actually encourage more people to seek a diagnosis earlier. Frightening phrases put people off wanting to seek help, but by adopting words that are balanced and accurate, more people may be willing to ask for help and support sooner.

Adopting respectful terminology can have a hugely positive impact in changing peoples’ overall perceptions of dementia. The reality of it is that almost everyone is affected by dementia at some point in their lives. The use of appropriate terminology can make this interaction, no matter how big or small, that little bit easier.

Lyn Jardine
Head of Innovation and Development, Viewpoint