Public awareness of dementia may be growing rapidly, but Kate Corr believes the language we use to describe it often seems to lag behind

Laura Borrell was recently diagnosed with dementia at the shockingly young age of 39.  Laura’s story made newspaper headlines last week when she revealed one of her bucket list ambitions; to take a road trip through America with her husband Phil. Laura’s determination to make the most of every moment was undoubtedly moving, inspiring and newsworthy. But the media stories about her were filled with the same old clichés and battle metaphors and produced only a heart-sinking reaction from those of us who care about the way dementia – and the people living with it – are perceived.

Take a look at these headlines:

Dementia sufferer, 39, plans road trip (Daily Express)

Wife fighting dementia aged just 39 (Daily Mirror)

Wife struck down with dementia at just 39 (The Sun)

The brave woman fighting dementia aged just 39 (Mirror Twitter account)

The gloomy truth is that, although our awareness and understanding of dementia has grown, we seem to come hopelessly unstuck when we’re asked to simply describe it or the people who have it. Whether ignorance, laziness, fear or a combination of all three are to blame for the headlines above, remains to be seen. But their impact is clear; they are designed to remind the reader that dementia is utterly tragic and devastating, especially if you are as young as Laura. Whilst dementia may certainly feel that way when you’re diagnosed, there is surely a better way to describe it; one which respects the people who live with it and regards them as fully rounded human beings who may experience a whole range of complex emotions.

Victims and sufferers

A person with dementia may considers themselves to be a victim and this is totally understandable. After all, they didn’t choose to get dementia and have no power over their diagnosis. It simply happened to them. However, this does not mean it’s okay for other people to describe them as victims. Why? Because there’s no denying that labelling someone a ‘victim’ can change how others perceive them. This can, in turn, change how they are treated. The same applies to the word sufferer. Surely the person with dementia is the only one who can decide if they are suffering or not? We can’t make that assumption for them. Besides, a victim or sufferer is a person without the autonomy to make their own decisions, a person who is totally reliant on others to make decisions for them. Is this how we perceive people with dementia? If so, it’s also inaccurate because many people with dementia remain independent and in control of their own destiny for quite some time.

Finally, words like victim and sufferer hark back to the days of paternalistic care (when decisions were made on behalf of the person who’s ill rather than with them). Frankly, we’ve come a long way since then in our understanding – who wants to go backwards?

Struck down with dementia

We have never heard of anyone being ‘struck down with dementia.’ Dementia rarely, if ever, comes as a bolt from the blue, it usually progresses slowly and, by the time a person is diagnosed, signs and symptoms have been apparent for quite some time. Phrases like this suggest woeful ignorance.

Brave fights and lost battles

Dementia is an illness, not a battle that must be fought. Bravely. Sometimes people live well with dementia, and sometimes not. Why should people with dementia be encouraged to ‘fight’ rather than simply live? Besides, since there is not yet a cure for dementia, we all know how the ‘battle’ is likely to progress. And if a person with dementia ‘loses the fight’ does that imply they somehow failed to fight hard enough? Surely anyone on the dementia journey has enough to contend with without the added burden of an ultimately meaningless label? People with dementia are rarely one-dimensional brave heroes or fighters. Even if they do have moments of incredible bravery, we doubt they want their whole life to be totally defined by their ‘struggle’ with the illness.

Of course, you may tell a person with dementia that they’re ‘brave’ because you want to be polite, or maybe you feel awkward and don’t know what else to say. Maybe you’re so scared of dementia yourself that you think anyone who manages to get on with their life must be ‘brave.’ But however good the intention, the fact is that the word ‘brave’ over simplifies their experience. Imagine if someone kept telling you how ‘brave’ you were when all you were doing was going to the shops, booking a holiday, and living your life. Some people with dementia may never feel brave at all – and that doesn’t make them, or their life experience, of any less value.

As a society, we need to find a way to talk about dementia that doesn’t demean the people living with it, a language which is truthful but which offers hope and which, most importantly of all, focuses on life, not loss.

What do you think? We’d love to hear your views and thoughts…