‘When we talk about dementia, the person must remain at the heart of the story'

Last month I visited an exhibition called A Little Piece of Magic at Cork City Library, featuring work created by members of Cuimhne, a Cork-based group for people living with young-onset dementia and their significant others.

It was a fascinating exhibition, not least because it offered something often missing from events about dementia as among the artists were people living with the disease.

My partner, PJ, has lived with young-onset vascular dementia for a decade. Well, to be truthful, we both live with it, although the life it has imposed on me is far easier than the one it has imposed on him.

Our ordinary life – our lovely life – has been reshaped by this illness and now bears little resemblance to the life we lived before PJ’s diagnosis. But it has not changed equally. PJ is largely housebound and has very little autonomy. I can still work, albeit from home, and leave the house for short periods. PJ has no such escape – yet people often ask how I am coping before they ask how he is.

They mean well when they tell me how hard this must be. I’ve no doubt that everyone living alongside someone with a life-limiting illness has heard those sympathetic words more times than they can count and appreciated them too.

But what about the person actually living with – and eventually dying from – the disease?

Despite everything PJ is going through, it feels as though this has become everyone else’s story rather than his – or that of anyone living with the disease – as newspapers devote numerous column inches to families and radio stations interview husbands and wives, sons and daughters.

It’s understandable. Dementia can make conversation difficult.

At medical appointments, questions are often directed to me while PJ sits between us.

“Is he sleeping? Is he eating?”

I answer because one of us has to. Yet every time I discuss him in the third person while he sits beside me, I risk erasing him a little further.

Likewise, when someone calls – although few do now – he may struggle to follow the conversation, but he is listening. While he might not remember your name, he can feel the warmth of your hand on his arm and hear the kindness in your voice.

As someone living alongside a person they love with a chronic, incurable illness, I would love to see the way we talk about illness change.

We have begun to recognise this in the language surrounding cancer, becoming increasingly reluctant to say that somebody “lost their battle” and acknowledging the unintentional cruelty hidden within that well-meant phrase. If one person loses, another must have won and, if survival becomes a victory of character, does that somehow make death a failure?

So I don’t want to talk about “fighting” dementia. No one can be expected to win a fight with a progressive neurological disease. And what does winning look like when there is no cure? PJ’s decline is not a failure of courage or character, any more than my inability to prevent it is a failure of love.

Many people with dementia live at home, remaining part of families, neighbourhoods and communities. But simply existing is not enough for people who may live, as PJ has, for a decade or more with this disease.

We have begun to recognise this in the language surrounding cancer, becoming increasingly reluctant to say that somebody “lost their battle” and acknowledging the unintentional cruelty hidden within that well-meant phrase. If one person loses, another must have won and, if survival becomes a victory of character, does that somehow make death a failure?

So I try to think differently, as I search within an ever-smaller world for what remains rather than measuring each day by what has been lost.

We must learn how to live alongside and include people with dementia – speaking directly to them, rather than only to the person beside them. Giving them time to answer – or not. Resisting the urge to correct them, easier said than done, I know, and never assuming that difficulty finding words means they have nothing to say.

It is the very least they deserve.

This is not an argument against supporting partners and families – God knows that support is needed. It is a reminder that such support should never come at the cost of erasing the person at the centre of it all.

So, by all means, ask me how I am – but ask PJ first.