The words we use for dementia shape how people are seen

A debate over how people with dementia are described has drawn attention to the tension between plain observation and language that may strip people of their dignity.

Sally Byers criticised Polly Toynbee’s use of what Byers called “deeply troubling language”. The phrases at issue were “glazed stares or sleeping mouths agape” and “that terrible human vacancy”. They appeared in Toynbee’s article about the choices facing Louise Casey on social care, including who will pay.

Why the wording matters

The Dementia Engagement and Empowerment Project’s language guide for journalists lists “dementia sufferer” among the words and descriptions to avoid. It suggests alternatives such as “person with dementia”, “person living with dementia” and “person living well with dementia”.

These alternatives place the person before the diagnosis and, in the guide’s preferred wording, avoid defining someone solely by dementia. The discussion also shows why language guidance can be contested: a phrase intended to be respectful may not reflect every person’s experience.

A different view of care-home experiences

David Lee Staveley, who signed a letter from Cumbria, disagrees with the guidance’s preferred descriptions. He argues that Toynbee described what she saw and that her words had impact.

Staveley says that, in all the care homes he has visited to see elderly relatives, people with dementia were suffering rather than “living well with dementia”. That is his personal observation, not an independently established finding about people with dementia or care homes generally.

A question of accuracy and respect

The exchange does not resolve whether one set of terms can accurately describe every experience of dementia. It does underline two competing concerns: language should not reduce people to a diagnosis or a bleak image, but it should also leave room for accounts of distress and difficult care experiences.

For readers, the central issue is not simply choosing a preferred phrase. It is recognising that descriptions can influence how people with dementia are understood in public debate, while keeping individual experiences and uncertainty visible.

AI tools were used to assist with the preparation of this article under our editorial standards.