Fergus Finlay: Older age deserves to go hand in hand with human dignity

Shanghai is China’s second city, although it has ideas above its station. Many of its people (with justification) regard it as the real capital of China. It’s often called the pearl of the orient, and its citizens are among the proudest on earth. Since 2005, our pearl of the south — our real capital — has been twinned with Shanghai.

That’s why the then Lord Mayor of Cork — I think it was Donal Counihan — flew out to visit the team. As Chair of Special Olympics at the time, it was my job to welcome him, but Pat instantly relieved me of the duty. He took the Lord Mayor in hand and showed him around, introducing him to any of the Irish team in action (and especially, of course, the members of the team who happened to be from Cork).

Pat was pure charm. He had Down syndrome but was never defined by that. I’ve told you before, I think, that my daughter Mandy, who also has Down syndrome, hates the term. It makes people look down when you say Down syndrome, she says (and she’s right). That’s why she always insists on telling people that she has Up syndrome (and why I’ll use the term for the rest of this piece).

But actually, Pat was the personification of Up syndrome. Funny, resourceful, and brave, he represented his county and his country with honour on a number of occasions and would always come home festooned with medals. He also helped Special Olympics in its fundraising and in raising awareness 

He was a trailblazer for people with Up syndrome and never met a barrier he wasn’t willing to confront. In fact, he was one of the legends of the entire Special Olympics movement — recognised everywhere that Irish Special Olympians gathered, and always mentioned with a grin.

There’s a reason people with Up syndrome are often called special. It may not be what you think it is, because I’ll tell you the thing that marks them out. There’s a gift that people with Up syndrome have. It’s understated and not always recognised. When their needs are being assessed their IQs tend to be measured and recorded. Never their EQs.

But when you get to know someone with Up syndrome, often the thing you learn to really treasure in them is their emotional intelligence. Pat overflowed with empathy and understanding. Along with his resilience, it was the reason — I’m guessing — that his brother Theo Dorgan (sort of a hero too) referred to him as the best of men.

Pat died last week, and was laid to rest on Saturday, the day before his 60th birthday. Theo told me that in recent years he had withdrawn into himself, and in the end passed very quietly away. Theo said he didn’t know what would be on the death certificate, but the best way to put it, he said, would be that he passed away very quietly, surrounded by loving sisters and brothers, with a gentle grace.

He will always be remembered that way. How many of us can say, hand on heart, that we lived our lives to our fullest potential, that we always made the contribution we were capable of making, that we achieved everything we were capable of? But Pat Dorgan did. In spades.

Pat actually shared a birthday with our daughter Mandy. She was 51 on Sunday, and we had a family party — and I raised a glass for Pat in the process.

So we’ve known Up syndrome for half a century. Our experience tells us that for all its challenges, for all the barriers and bureaucratic obstacles put in her way, despite all the inadequacies of service, at every age and in every aspect of life, our world would have been poorer without Up syndrome in it

But there is a cruelty at the heart of it, a double injustice. In most cases, Up syndrome is an accident, a random occurrence that affects the start of life and presents challenges to people as they grow. But we know now that about a third of people with Up syndrome slip into dementia in their fifties, and half in their sixties. For all sorts of reasons, often because communication becomes more difficult, it can go undiagnosed.

We have seen it all around us. Mandy grew up surrounded by friends who, like her, coped in their own way with Up syndrome. We’ve known some of them for more than thirty years. They’ve shared outings, hilarious nights at parties and dances, endless conversations, the closest of close friendships.

Several of them are gone. Several more are slipping away in front of our eyes. None of them have passed their middle 60s. If Mandy stays well, as she is now, she will lose every friend who is a little older than she is. And that’s heartbreaking.

Dementia is already recognised as a national issue in Ireland. The numbers aren’t at epidemic proportions (not yet anyway) but they’re serious and growing — around 65,000 people in Ireland have dementia right now, and that’s estimated to grow to 100,000 in ten years’ time.

There is a national policy on dementia in Ireland, published by the HSE in 2015, and the Alzheimer’s Society has published several more really good papers over the years, on issues like safeguarding and loneliness.

Our published policies talk about integrated care, age-friendly approaches, methods of prevention, the need for research, and there’s been some investment and political effort put into all those areas. But we all know, I think, that when push comes to shove, the real policy is outsourcing.

If the family or loved ones of a person with dementia can cope, we hope they will, and we’ll offer bits and pieces of home support. When it goes beyond that, we pay a network of private providers all over the country to provide accommodation and care to 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 of course, to enable the providers of care, who are now a powerful lobby group in their own right, to make a decent profit margin.

I suppose it works, after a fashion. But older age deserves to go hand in hand with human dignity. The generation that is experiencing dementia now is the generation that built this independent little country and left a legacy to be proud of. That’s the thing we should never be allowed to forget.