Dementia Support Line
Real stories
My dad inspires my music that fundraises for dementia research
Nigel Starmer-Smith enjoyed an incredible sporting career and, to his son Charlie, has always been a hero. Following many challenges as a family, including the progression of Nigel's dementia, Charlie relied on music to unpack his feelings. Now he is fundraising for Alzheimer's Society with his latest song, Tonight.
In my heart of hearts, I already knew there was something wrong with Dad, but it was only when we heard him stumble during rugby commentary, live on air, that I had to face up to reality.
In his long career as a rugby commentator, Dad made very few mistakes.
These errors were entirely out of character.
His producers were seemingly unaware and I have no doubt that it was 40 years of muscle memory that helped him get through the tournament.
He’d never commentate again. In fact, such was the impact of this form of frontal lobe dementia (also known as frontotemporal dementia, or Pick's disease) that within six months, he was barely able to string a sentence together.
Image above: My dad, Nigel, playing rugby as a young man before becoming a commentator a little later in life.
Looking back now, there were plenty of warnings signs – a man who was the life and soul of the party had started to shun the limelight. He would become anxious about any social engagement and much of the spark that made him such good company had gone.
The father I loved was slowly slipping away from us before our very eyes.
My dad has always been my hero.
Not just for his England rugby-playing achievements or his commentary prowess, but for how, despite the adversity he faced, he remained such a wonderful, loving father.
Facing challenges as a family
My family have been dealt a terrible hand – my sister died when she was just 16 from a rare blood condition, and then my brother from a type of lymphoma. He was only 19. No parent should have to bury a child, let alone two.
I remember saying at my brother’s funeral that I believed that the sun would shine for my parents in time. The truth is it hasn’t and Dad’s dementia diagnosis only confirmed that.
Image above: My dad and I with my brother, Julian, pictured front.
I knew a little bit about the disease as it was something my dad’s brother also lived with. He died not long after Dad himself had been admitted to a specialist dementia home.
From afar, you have no idea just how cruel and life-changing dementia can be - not just for Dad, but everyone around him.
It is a slow, inexorable decline that sees you mourning the person you have lost while they are still alive - something that was only heightened by his enforced isolation during lockdown.
The burden – both physical and mental – fell heaviest on Mum and no doubt contributed to her own poor health.
My mum was belatedly diagnosed with late-stage bowel cancer earlier this year, which made things doubly difficult for our family.
Image above: My mum, Ros, cared for my dad.
Music became my escape
My day job is in travel, but during lockdown it was music that became my escape - a way to channel and unpack some of the pent-up anger, sadness, frustration and despair.
I was asked by my mum, who by this time had moved in with us as she underwent chemotherapy treatment, to send a song into a competition that BBC 5Live was running around lockdown music.
At the time I refused, not only because song-writing was all new to me, but it was also something very personal.
Image above: With Dad holding my youngest son, Harry, at the care home.
I’d never thought about anyone else hearing it, let alone it being played on air. However, after my mum nagged me almost on a daily basis, I eventually agreed.
The song I chose to send in is called Spotlight - it is about my dad’s battle with dementia but I hope it will resonate with anyone who has been affected by this cruel disease.
To my surprise, the radio producer came back to say they'd love to play my song.
I went on the BBC 5Live’s Breakfast show the following week and talked about the music but also about my dad and his struggles.
Even more unbelievable was that an award-winning producer was listening to the programme and got in touch the next day and invited me to Abbey Road. A few weeks later I recorded an album in the iconic Studio 3, which was totally surreal.
Songs dedicated to both of my parents
I launched my debut single, Spotlight, last November and gave proceeds to Alzheimer’s Society. Now I am doing the same with my latest song, Tonight.
Alzheimer's Society is doing some fantastic research into possible links with contact sports as part of their Sport United Against Dementia campaign.
Image above: Dad has always been my hero, not just for his England rugby-playing achievements
I dedicated Spotlight to both my parents. Sadly, not long after the album was finished, my mum passed away but not before I had a chance to play it to her, which was very emotional for both of us.
Music has given me something positive to hold on to in these dark times.
If my music can help raise awareness and money for such a worthwhile cause, then I know Dad would be so proud.
'Tonight' is out on 6 June. Search for Charlie's music on Apple Music, Spotify and all other leading streaming services. All proceeds are going to Alzheimer’s Society.
You can follow Charlie on social media. Visit linktr.ee/charliestarmersmith
This article was first published in November 2021 and last updated in May 2022.
Andrew Carmichael
saysAdrian Howell
saysDear Charlie,
Having lost both my parents to this disease I empathise with you.
Like your father you demonstrate amazing strength and inspiration. For my generation there were two commentators, Mr. McLaren and your father.
God bless
Catherine Morgan
saysDear Charlie, I've been thinking of your lovely Mum Ros and Dad Nigel. Your Dad spike at my Dad Cliff Morgan's funeral, he was wonderful and so kind and funny as was your gorgeous Mum. My Dad thought so highly of your Dad and was incredibly fond of both your parents. I couldn't think of another way of contacting you, and I just want to say if there is ever anything I can do just say the word. Love Cath Morgan
Jennifer Khan
saysHello Charlie … love your song~have downloaded it, you’ve got a lovely voice … So so sorry to read about your Dad and Mum … quite a few years ago I used to be a care worker for an agency here in London. At the time I lived in W11 and I was given a weeks work in an Alzheimer’s day center, in W10 not that far from where I lived .. as I got on well with the people who went there the manager asked me if I wanted to carry on going on a weekly basis whilst still affiliated to the agency. I did and was with them for quite a long time. It was a happy place, the attendees would come in at 9am, later have lunch, have various activities etc and in the afternoon we would take a few out in the mini bus for a ride round West/North London, different places different days. I had never encountered Alzheimer’s prior to going to the day center and was very saddened by the different levels of forgetfulness. I remember all of the attendees though. I now live over in East London and am retired so don’t go there any more. My work did come in handy when a gentleman moved into one of the flats here, in the Sheltered Housing, where I live, with Alzheimer’s as the council didn’t have any other place to send him with the required residential homes places not being available. He took to me and I to him as I understood where he was coming from. He didn’t stay long, thankfully, as he would leave his flat sometimes and forget which one he was living in … funny enough he would remember me, to a certain extent, when we met in the hallway … the last time I saw him was last Christmas when he came here for our Christmas lunch in the lounge turned into a dining room … I do wonder how he is and hope all is alright for him ….
All the very best Charlie~to you and your family~have a wonderful Christmas and all the best in 22 … do some more songs 👍🏻👍🏻👍🏻😁😁😁
Rebecca Clarke
saysDear Charlie and whanau thankyou so much for sharing your story i work in a Resthome, Hospital, Dementia HealthCare facility here in Turanga-nui a Kiwa, Aotearoa and i see changes of our beautiful people with dementia change every day and the love and hurts on the faces of their loved ones who witness these changes too and i must add Care staff also. I am sorry to hear of your loss but know that through your story you have many people out here that support you and your family with love and utmost admiration for all that you have been through. All our love from my family to yours Charlie and God Speed.
Roger Brown
saysDear Charlie
Thank you for sharing your story with us and your song is incredibly moving and your courage is truly inspirational. As a long time rugby fan, I well remember your father in his role as a rugby commentator, he was the consumate professional and his love of the game was apparent to all, including me being an All Black's supporter living in New Zealand. I was also an avid purchaser of the Rugby World magazine that Nigel was the editor of and I am also the proud owner of several of the rugby books written by Nigel. Your family's tragic story also resonates with me personally, as my wife died in April this year at the age of 54 from Frontotemporal Dementia, it is a truly cruel and debilitating condition and I can relate to exactly what you and your family are going through.
All the very best.
Kind regards
Roger Brown
Christchurch
New Zealand
Peter Stephan
saysHi Charlie
Stay strong my friend.
My mom too has dementia very hard to deal with when you love somebody so much.
I remember your dad. I was at bishops school in Cape Town and around 1969 your dad came to couch our under 16 rugby team.
We were all in awe that somebody so famous would give up their time to come to talk to us. Says a lot about the character of your dad. I remember how he showed us the reverse scrum half pass and chicken wing pass. A person way ahead of his time. All the best and thanks to your dad for the memories. God bless. Keep up the singing. Music can unlock the keys to the heart. Cheers Peter
Ann Benson
saysIn the hope you have mail forwarded I have sent a letter to Cobblers Cottage - .
Joanna Byford
saysDear Charlie, thank you for sharing your heartfelt song and fundraising for the Alzheimer’s Society. My heart goes out to you for your loss and pain. You are a strong man to dig deep and do something positive in your father’s memory. I too lost my dear dad 4 months ago after many years with dementia. The life-changing impact on the individual and the family is so huge and can last many years. I am grateful to AS for their information. We set up a donation page to raise money for the charity as part of dad’s memorial and people were so generous. Dad would have been pleased. Take care and enjoy your family and live your life to the fullest! . Your parents would be so proud of you .
Lynn Rowland
saysDear Charlie,
Thinking of you at this sad and difficult time.I was one of Nigel's best
friends at Oxford, We played rugby at Univ, went to geography tutorials
together and had a lot of fun besides. I was 'best man' at your parents'
wedding and Nigel is godfather to my son.Please be in touch!
Jane MacLean
saysWhat a beautiful song, very meaningful and it has brought back memories of your wonderful family - I taught Charlotte lacrosse and your Mum and Dad were always on the sidelines cheering us on! I have pictures on my walls of Charlotte in various teams, always with a huge smile. x
Gail Elliott
saysWish this could be ordered I don't download music but would love to hear it and share it
Alison Walker
saysAbsolutely beautiful, poignant, heartbreaking song Charlie … the song resonates with all those of us on this cruel journey with you and all our loved ones. My mum has been living with Alzheimer’s for over 7 years now. Thank you for sharing your story with us and good luck with your campaign to help find a cure for dementia.
Charlie Starmer-Smith
saysThank you so much Alison - I really appreciate it
Sarah Ralston
saysHappy memories of listening to your Dad with my Dad throughout my childhood, so very sad to hear about his dementia. We lost Mum to dementia and I wouldn't wish it on anyone's loved one. Your family has had such awful sadness, I hope music provides some escape for you. Love the song and wish you every success in raising much needed funds for Alzheimer's research.
Charlie Starmer-Smith
saysThanks you Sarah - really kind. So sorry to hear about your Mum.
Rebecca Bell
saysI feel your pain - what a wonderful
Way to express and release emotions that you can no longer speak to your father about. I know your pain and will definitely be supporting your beautiful spotlight to help find some further medical help for this torrid heartbreaking disease, we need something from such amazing scientists - we need more