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. However, that sentence proved to be my greatest fear.

Although he was correct in his description of a relatively insignificant passage of play, they were not in the right 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

When someone is still living, dementia causes an inexorable, slow decline.

There were warning signs. Dad was once the heart and soul of every social event. He became more distant from the conversation, lost interest in guests, and even disappeared to play with his children. We all knew it was true, but we didn’t want to be ashamed.

It was inevitable, however, because of his rapid decline. Dad began commentating on World Rugby Sevens in the spring 2015. He was later diagnosed with dementia that summer. He could not even utter one sentence by autumn.

Our family has had to deal with some tough decisions: My brother and sister both died due to non-Hodgkin Lymphoma, while my brother was 19 from rare blood conditions. 

This is the worst. The person with dementia experiences a gradual, irreversible decline.

My dad and I took him to the Rugby World Cup Finals in October 2015. Surprisingly, even though he’d been a commentator on thousands of matches over the years, this was his first time as an observer at an international since he was young. This would be his last international.

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

A doctor once explained to me that Dad’s type of dementia is akin to taking a hole punch to the brain. You can randomly make small circles and it will eventually hit a key part. 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. His meticulous commentary notes, his roaring crowd and the distinct smell of beer and sweat are all that I recall.

It was the time I remember the interview in the changing room, the feeling of having my hair ruffled by the hands legends Wade Dooley or Mickey Skinner and the star-making moment when Rory Underwood or Will Carling came to see 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. What a Saturday I loved.

We reversed roles and Dad was now guiding me with a protective arm through Twickenham’s crowds. I didn’t want him to get lost in an arena where he had commentated on the game a hundred times or played scrum half for England.

A few would stop and look at us twice when we were passing. ‘Is that Nig …?’ Their voices trailed away as we hurried on. As the All Blacks outclassed Australia, we sat on the stands and watched. Dad was in the stands, but he wasn’t there.

He was also awarded the Vernon Pugh Award for his lifetime of service to rugby during the World Rugby Awards. While he wasn’t able to give a speech, however, he was able go on the stage to receive the standing ovation of the best and brightest in the sport. We all felt proud. He was a rare find.

Six years later, my father is no more recognisable. In the later stages of his frontal lobe disease, my father is unable to walk or speak and has trouble swallowing. 

His strong, once powerful hands are now weak and contorted. His cheeks and eyes are hollow, and his legs and legs are only skin and bones.

Many articles have been written on the effects of lockdown. However, my personal view is that those suffering from dementia suffer more. It has been a terrible experience for everyone involved: the enforced isolation, lack of stimulation and total absence from human touch. 

The slope Dad was sliding down from with lockdown became so steep that we couldn’t hug him or hold his hands until then, all lucidity was gone. I’m not sure if Dad recognizes me anymore.

According to the UK government, around 850,000 people are living with dementia. However, some believe this number is much higher. The millions of people whose lives have been turned upside-down by this terrible disease is just as tragic.

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

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. It was Saturdays that I loved!

Ros, my mother was greatly affected by the stress. While the challenge of caring for Dad at home over many years was difficult, it wasn’t as severe as the mental stress.

You must try to bring levity and laughter. That’s what you have to do.

Dad’s social filter was the most important thing he had to do. 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. You can randomly make small circles and it will eventually hit a key part. I know it’s over-simplifying it, but it helped me understand the sudden life-altering changes that would happen.

My wife Katie and me went with our three children to visit my parents on a Sunday in the latter part of 2018.

Dad could still walk slow around the yard and play with Jack, my oldest son. He looked tired when we got home in the evening and sat in his chair. He wouldn’t get up. The brain which tells legs to work had been hit by the punch hole.

It was impossible to resist the urge to find help. We found it near Oxford in the form of a dementia specialist home.

The home was purpose-built to accommodate dementia patients. It took some time to get used to. It was hard to accept the reality of the future and hear the shouts and grumbles of residents.

It has given us 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 travel the 45 miles roundtrip every day to go visit Dad. Some friends have not felt able to visit Dad, and I don’t begrudge them at all. It can be too difficult for some. Many wanted to keep him the same. Some people may not find him as relevant.

Mum was not supported by anyone and the stress she endured made her sick. She was diagnosed in February with advanced bowel cancer. Our family had just moved to London to be closer to my parents. It was also a blessing that Mum could move in with us during 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. As I started to compose songs, I discovered I was able to say things that I had difficulty saying 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.

Evidently, I declined. It was my 43rd birthday. I was in midlife crisis territory. Plus, these were hugely personal — it would be akin to reading out your own diary on a packed commuter train.

My Mum persevered and her disease progressed. After taking a deep breathe, I sent in the song that I had written about Dad. It’s called Spotlight. The name Spotlight refers to the desire to bring attention and light onto this awful disease.

To my surprise, BBC 5 Live said they’d love to play it and talk to me about Dad. My story struck a chord on Saturday morning’s breakfast program.

It was even more amazing that an award-winning music producer, who had been listening, got in touch with me the next day. I met him at Abbey Road. My 13 songs were still intact three weeks later and I was back at Abbey Road, recording my album. It was an incredible experience.

By this time, Mum’s treatment had been stopped and she was moved to a hospice. She died shortly after. However, I was able to give her the album. It was quite emotional.

Spotlight was officially released last week, with all proceeds going to the Alzheimer’s Society. It has received a tremendous response. In just over one week, Spotlight reached Number 6 on the iTunes charts.

It has been amazing to see the thousands of messages from strangers, sharing both their stories of grief and many touching stories about dad.

BBC aired even a brief documentary on Dad. It featured me filming him at 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.

Spotlight can be downloaded on iTunes, or streamed on Spotify and other top streaming platforms.