Fergus Finlay: We need to talk about the terrible and traumatic effects of dementia

Sometimes the memories are all you take with you into older age. And then dementia comes after them, stripping them away one by one

The best estimates available suggest that 100,000 of us will have dementia in 10 years’ time, 150,000 of us in 20 years.

I was in a hospital, visiting, on Saturday night. It’s a biggish hospital, old but with a highly committed and welcoming team of staff. It does a lot of different things, and it also has long-term “residents”. We were visiting someone who is on the mend from surgery but was very keen to have a bit of company to watch Ireland playing Tonga in the Rugby World Cup.

The hospital had kindly set up a large screen in the dining room, and everyone who wanted to watch the match, patients and visitors alike, was welcome to go down from their bed in the ward. Not too many availed of the offer, and it was a small enough group who cheered Ireland on. But it was worth doing, and the outcome certainly cheered our patient up.

But as we were leaving I heard something that for some reason left me feeling really sad. One of the residents in the hospital — and, in case you hadn’t realised, residents are people who cope with dementia — was a man who played rugby for Ireland, not once but many times. I am old enough to remember his exploits and to count myself among the thousands of admirers he had back then.

He didn’t watch the match last Saturday night. He was in bed before the kick-off, with no memory of ever having played for his country and no interest in watching something that, now, he cannot understand at all.

As I drove home, all I could think about was how cruel dementia is. You live a life that’s hard-working and honest. You make the best contribution you can to the world around you. You don’t make a lot of money, but you accumulate a lot of memories. Sometimes the memories are all you take with you into older age. And then dementia comes after even your memories, stripping them away one by one.

There can be more than cruelty involved. All through our adult lives, my family has known people with Down Syndrome. They’re friends, people we love and whose company we have always enjoyed. We’ve celebrated achievements together, watched them become the best people they can be, and had hilarious nights at their birthday parties or in the audience watching them perform on stage.

And now, suddenly, there is a terrible decline. Two of them are gone, three more are slowly slipping away from us. None of them are yet sixty.

Like I said, that’s more than cruelty. Imagine being born with a condition that limits your potential, despite your best efforts. Imagine struggling all your life to be accepted with that condition — because you’re labelled, sometimes written off, often pitied, and treated like a charity case. Imagine getting to a point where, with all the barriers piled high, you can still say, “I’m proud and independent”. And then, just then, dementia strikes.

Could there be a higher level of injustice? People with an intellectual disability in Ireland — including people with Down Syndrome — are citizens who can never exercise the full range of rights that other citizens can. I have written here before that if there is one last great unresolved (and unaddressed) human rights issue, it is the cause of people with an intellectual disability.

I don’t have the space today to say everything I’d like to about that issue, because this is a column about dementia. But just think about this for a second. For a whole variety of reasons, people with Down Syndrome used to not live to old age. Now they are living much longer. And they are much more likely than most of us to suffer dementia. According to the Alzheimer’s Association one in every three people with Down Syndrome in their fifties will get Alzheimer’s Disease. In many cases, because of the communication difficulties some were born with, it may go undiagnosed for a long time.

You’re born with an incurable condition. You live your entire short life with it. You overcome the barriers it throws up if you can. And then you die with a different incurable condition that robs you of everything you have left. It reads like the definition of injustice, doesn’t it?

I’ve experienced dementia in other ways, in my family and among friends. I watched someone I care deeply about lose all the things he valued most through dementia — his wit, his passion for life and politics. I know he wished — when he could — that his condition was physical rather than neurological. “If the condition was in my body,” he told me once, “I’d be the one in pain. But because it’s in my head, everyone who loves me has to feel the pain instead.” This is of course the point where I’m supposed to tell you what the answer to all this is. I don’t have one.

There is a written public policy on dementia in Ireland. It was published about 10 years ago and hasn’t been updated since, at least as far as I can find out. It estimated back then that there would be 68,000 people living with dementia in Ireland around now. In its recent pre-budget submission the Alzheimer’s Society broadly agrees with that. That’s the entire population of Waterford city and Dungarvan combined.

Our published policy talks about integrated care, age-friendly approaches, methods of prevention, and the need for research. All good stuff no doubt. But what’s the real policy? For years now we have outsourced dementia. If a family can cope, they’re expected to cope. When it goes beyond that, we pay a network of private providers all over the country to provide accommodation and care for people who can no longer live at home. We’ve developed a set of complicated arrangements to try to make private nursing home care affordable.

And to be honest, it works after a fashion. It enables us to say we are doing something.

But dementia involves loneliness, sometimes beyond enduring. It can involve the loss of human dignity. It can involve grown men and women being treated like babies. It involves grief and separation. It’s not for nothing that dementia is often called the long goodbye. We’re helpless in the face of all that. There’s no policy for any of it.

It’s 2023 now. The best estimates available suggest that 100,000 of us will have dementia in ten years’ time, 150,000 of us in twenty.

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That may not be an epidemic. But it’s a silent tragedy that’s growing day by day. Silent because we choose not to talk about it. We drive past the nursing homes in which people live without hope and we look straight ahead.

We need to open up a real discussion about this. About ageing. About dignity and rights. About the choices people ought to be able to make for themselves while they can.

Above all, we need to get it out in the open. Dementia hurts, terribly. Its effects are deep and traumatic, not just on the person who suffers from it, but on an entire circle of people around him or her, who are helpless in the face of it. But it oughtn’t to happen in the dark. The least we can do, surely, is talk about it.