The convention that has developed in recent years is to talk about people living with dementia rather than suffering from it. This has been a healthy antidote to the unrelentingly bleak image of dementia that has persisted for as long as anyone can trace. However, I feel that there are risks in the new correctness and I blogged about this in February last year. 

I want to return to this theme, because language is important and I think the language of dementia needs to reflect a more complex picture. This is often in my thoughts, but the immediate prompt is this interesting and heartfelt blog by Mum Has Dementia.

Aren’t both approaches right? Someone who has dementia is living with it – they’re not among the living dead, as some irresponsible writers would have us believe. Many people who have dementia have a reasonable or even good quality of life and using the right language helps them and those who care for them achieve this. People with dementia might also continue in work for years and function impressively.

It’s also unhelpful to use the word “demented”. It’s been misused for so long that it now carries all the wrong connotations and not a lot of respect. The dictionary definition in the photo used with this blog is "mad or insane" - completely wrong if we are talking about people with dementia. This dictionary's definition of "dementia", too, falls short and shows how much we have moved on in the few years since it was published.

At the same time, there is obviously great suffering involved in many cases, whether to people who have dementia or those who love and care for them. They tell us this when they contact the BRACE office, and we’re not going to tell them that no, that’s not really their experience. If there was no suffering involved, there would no charities like this one and no global drive to beat dementia.

In the end, it depends what your role is. If, for example, you are running a charity which provides care for people with dementia, you will inevitably need to use language which emphasises the positive, the ways in which people who already have the condition can best live their lives. This could help many people achieve the best quality of life possible and guide those who provide care and support. It also confronts the fear and ignorance that creates prejudice.

We’re running a research charity, though, and we need a different emphasis. For a start, the people who come to support us often do so on the back of considerable pain within their family or circle of friends. They tell us about suffering, we don’t tell them. To do our work, we need to galvanise support for the long struggle to find answers through medical science, and this means reminding people why the struggle matters. We also need to use a fairly combative language (the fight against dementia, beating dementia) because this best communicates our purpose and the determination we need to nurture. (On the subject of combative language, I note that Alzheimer’s Research UK has “defeat dementia” in its strapline while even the more broad-based Alzheimer’s Society claims to be leading “the fight against dementia”.)

I recently signed us up to the Dementia Words campaign run by the Dementia Action Alliance. It’s a good campaign, because it is challenging stereotypes and the hysterical language often used by journalists.

Through campaigns like this, I hope we are creating a better, more balanced vocabulary for dementia. My only concern is that we may be creating a convention in some circles where the reality of people’s pain and grief is denied. Our language needs to be sufficiently flexible and nuanced to express the wide spectrum of experience that dementia brings to the human race. Respect for people with dementia and those close to them, respect for their positive experiences and their pain.