How we talk about dementia

Hewat E (2025) How we talk about dementia.  Journal of Dementia Care 33(1) 5.

By Emma Hewat, Director of Dementia Care, KYN.

I have been involved in many initiatives over the years to promote and support the use of positive, person-centred language in a variety of dementia care settings, helping employees to understand why some words they use when writing and talking about people living with dementia are unhelpful at best, but stigmatising and damaging to the care provided at worst.


In 2023, I worked with Innovations in Dementia and a group of people living with dementia to review and update the 2014 DEEP language guidelines, referred to in the excellent article by Ian Davies-Abbott and Emma Roberts (pp31-35) describing their project ‘Reducing labelling and promoting person-centred language in dementia care case notes’.


These guidelines were created to educate employees, families, and professionals working in health and social care as well the wider public including the media. They are used during induction at KYN to help employees reflect on why some words do not support a person-centred approach to care. Sometimes people find it difficult to understand why certain words are wrong, for example ‘wandering’, ‘irritable’ and ‘difficult’. In their article, David-Abbott and Roberts describe so well that it is not necessarily the words themselves but the context in which they are used that make them harmful. Confusion around which words to use can be exacerbated by cultural differences and language barriers as well as lack of knowledge.


Sadly, efforts to change the language used in health and social care to reflect a more person-centred approach are often met with initial enthusiasm but little lasting change as team members revert to what is quickest to write, often copying others’ poor practice. This is not helped by electronic recording systems for medication and care that reinforce poor practice with their consistent inclusion of words such as ‘refused’, (non) ‘compliant’, ‘aggressive’ and ‘challenging behaviour’. If systems use negative words then surely its ok for team to use them, isn’t it?


In their article Davies-Abbott and Roberts report that around 25% of care time is spent on documentation. This suggests that more needs to be done to help employees understand that the recording of care and support is as important as providing the care itself. It is not something that can be done on the go, but needs dedicated time for employees to be able to think about the impact of what they are writing. Regular review, as described in this project, should be factored into homes’ employee development programmes to give them time to discuss and reflect. Only then are we likely to see a permanent reduction in non-person centred language in care and case notes.


‘How We Talk about Dementia, good practice guidelines for words and images’ is available to download here.