Nigel Starmer-Smith’s son describes the terrifying speed with which dementia stole his father away

Just one sentence, that’s all it was — one of millions my father, Nigel Starmer-Smith, had uttered during his long career as a rugby commentator. But that one sentence confirmed my worst fears.

The words he chose to describe a fairly inconsequential passage of play were correct, but they were in entirely the wrong order.

I had noticed the occasional uncharacteristic error during this particular tournament, but I’d put it down to Dad slowing down. He’d recently turned 70, after all.

But deep down I knew that my father, whose whole life has been built on the ability to communicate, was losing the gift of speech — one of the cruel symptoms of the dementia that may well have been creeping up on him for years.

Dementia causes a slow, inexorable decline, and you feel that gut-wrenching loss when the person is still alive

The warning signs had been there. Once the life and soul of any social occasion, Dad increasingly edged to the periphery of conversations, became anxious when guests arrived, or disappeared to play games with the children. However, none of us wanted to admit it.

But such was his rapid decline it was soon inescapable. In the spring of 2015, Dad was commentating on the World Rugby Sevens. That summer, he was diagnosed with dementia. By autumn, he could barely utter a sentence.

As a family we have been dealt some pretty tough cards: my sister died from a rare blood condition when she was 16 and my brother from non-Hodgkin lymphoma when he was 19. 

But this is perhaps the most cruel. Dementia causes a slow, inexorable decline, and you feel that gut-wrenching loss when the person is still alive.

I remember taking Dad to the Rugby World Cup Final in October 2015. Amazingly, although he had commentated on thousands of matches, it was the first international he had attended as a spectator since he was a child. It would also prove to be the last.

A doctor once explained to me that Dad’s type of dementia is akin to taking a hole punch to the brain. As you randomly chisel out small circles, every so often it hits a part that really matters. I know it’s over-simplifying it, but it helped me understand the sudden life-altering changes that would happen

As we arrived at Twickenham, I thought back to the halcyon childhood days when I’d spend my weekends with Dad travelling to stadiums up and down the country.

I’d follow him up rickety ladders to windswept commentary boxes and sit cross-legged on the floor. I remember his immaculate commentary notes, the roar of the crowd and the smell of sweat and beer.

I recall the changing room interviews, feeling the giant hands of legends like Wade Dooley and Mickey Skinner ruffle my hair and being starstruck as Will Carling and Rory Underwood bent down to meet me.

I can’t forget the mixture of incredulity and pride I felt when strangers would stop Dad for an autograph as we headed back to the car, or our ritual of fish and chips on the way home. How I loved Saturdays.

Now the roles were reversed, as I guided Dad through the Twickenham crowds with a protective arm, not wanting him to feel lost in a stadium where he had played scrum-half for England or commentated a hundred times.

A few people would look twice as we passed. ‘Is that Nig …?’ Their voices trailed away as we hurried on. We sat in the stand and watched as the All Blacks inevitably outclassed Australia. Dad was present but he was not really there.

Later that week, he was awarded the Vernon Pugh award for lifetime service to rugby at the World Rugby Awards. He was unable to make a speech but he was able to go up on stage and accept the ovation from the great and good in the game. It was a proud moment for all of us. Few then knew his condition.

But fast forward six years and my father is barely recognisable. Now in the advanced stages of frontal lobe dementia, he cannot walk or talk and he struggles to swallow. 

His once strong hands have withered and contorted, his cheeks are gaunt, his eyes hollow and his legs are just skin and bone.

Much has been written about the impact of lockdown, but in my view no one has suffered more than those with dementia. The enforced isolation, the lack of stimulation, the total absence of human touch has taken its toll. 

Lockdown so steepened the slope down which Dad was slipping that by the time we could finally hug or hold his hand, any lucidity had all but gone. Today, I am not certain that Dad recognises me any more.

Officially, there are some 850,000 people in the UK living with dementia, although many put this figure far higher. And just as much the victims of this cruel disease are the millions of loved ones whose lives are turned upside down.

I can’t forget the mixture of incredulity and pride I felt when strangers would stop Dad for an autograph as we headed back to the car, or our ritual of fish and chips on the way home. How I loved Saturdays

The impact on my mother, Ros, was profound. The physical challenge of looking after Dad at home for several years was nothing compared with the mental stress.

Of course, you try to find levity and laughter. You have to.

One of first things to go with Dad was his social filter. People he didn’t want to visit would be greeted not with pleasantries but cries of ‘Oh no, not you!’.

He’d spend hours gardening with entirely the wrong implements (sawing branches with a file), before returning to the kitchen covered in sweat to grab a drink. The fact that we later realised he’d quenched his thirst with a full bottle of Malbec made us laugh.

A doctor once explained to me that Dad’s type of dementia is akin to taking a hole punch to the brain. As you randomly chisel out small circles, every so often it hits a part that really matters. I know it’s over-simplifying it, but it helped me understand the sudden life-altering changes that would happen.

One Sunday, in late 2018, my wife Katie and I went to my parents with our children in tow.

Dad was still able to walk slowly around the garden and throw a ball with my eldest son, Jack, then five. But when we left in the early evening, he looked pretty tired as he sat down in his usual chair. He would never get up again. The hole punch had hit the part of the brain that tells the legs to work.

There was little choice but to seek help and we found it in the shape of a specialist dementia home near Oxford.

Purpose built, the home is designed around the needs of dementia patients. But it took some getting used to. We were immediately confronted by the harsh realities of what the future held and the groans, shouts and cries of the residents.

Yet it has also given us a sense of perspective. While we bemoaned the cruel fate inflicted on a commentator, we’d soon meet a world-renowned organist whose remarkable gift had been taken away and a French teacher who had been robbed of her linguistic skills.

We became friends with a Scotsman who’d worked all around the world only for his new world to become a small corner of Oxfordshire where his wife now resides, and we’d often see a well-known England footballer arrive to visit his mum, hiding the same sadness and anger we all felt, and leaving with the same guilt and despair.

Mum would make the 45-mile round-trip to visit every day. Some friends have not felt able to visit Dad, and I don’t begrudge them at all. Some find it too hard. Some wanted to remember him as he was. And yes, for some he is no longer so relevant to them.

Despite the support she had, the stress had been incalculable for Mum and I have no doubt that it played a large part in her illness. In February this year, she was diagnosed with late-stage bowel cancer. We had recently moved out of London, in part to be nearer my parents, and it proved a blessing as Mum was able to move in with us while getting treatment.

With three young children and an amazingly supportive and loving wife, I’ve had plenty of distraction and no shortage of purpose, but I needed a release — and music proved to be it.

I’ve always struggled to say how I feel: the acute sense of loss, the worry that I will not live up to the people my sister and brother would have been. But as I began to write songs, I found I could say things I struggled to do in person.

One day, in late February, my Mum mentioned that she’d heard that BBC 5 Live was running a competition, inviting people who had recorded songs during lockdown to send them into the show.

Obviously, I refused. I was 43. This was classic mid-life crisis territory. Plus, these were hugely personal — it would be akin to reading out your own diary on a packed commuter train.

But Mum persisted, and as her illness progressed so, in my mind, did her leverage. So I took a deep breath and sent in a song I wrote about Dad. It’s called Spotlight. As the name suggests, it is about the need to shine a light on this terrible disease.

To my surprise, BBC 5 Live said they’d love to play it and talk to me about Dad. The following Saturday, I went on the breakfast show and my story seemed to strike a chord.

Even more extraordinary, an award-winning music producer who was listening got in touch the next day and I went to meet him at Abbey Road. Three weeks later, nervously clutching my 13 songs, I was back at Abbey Road recording an album. It was a surreal experience.

By this time, Mum’s treatment had been stopped and she was moved to a hospice. Not long after, she passed away, but not before I had a chance to play her the album, which was very emotional for both of us.

Spotlight was officially released last week, with all proceeds going to the Alzheimer’s Society. The response has been staggering; in just over a week ago, incredibly, it has reached as high as Number 6 in the iTunes chart.

But just as astounding has been the hundreds of messages that have poured in from strangers sharing their own stories of loss, as well as many heart-warming stories about Dad.

The BBC has even aired a short documentary about Dad, which included filming me visiting him in the care home. It is something I agonised over, but I hope my mother, brother and sister — and Dad — would feel it was the right thing to do.

I’ll never know, of course, but what I do know is that it is high time that this cruel disease was put under the spotlight.

Download Spotlight on iTunes or stream it on Spotify or other leading streaming services.