Steve and the Dementia Friendship Club
Steve
& The Dementia
Friendship Club
An estimated 982,000 people in the UK are living with dementia today — a number expected to surpass 1.4 million by 2040. But behind every diagnosis is a family searching for somewhere to belong. Today we cross the Atlantic to sit with Kara Lockyer and learn about her 74-year-old father Steve, who turned the grief of losing both his parents to dementia into a weekly sanctuary for 120 people in Bolton, England.
"Sometimes you just need a place where no one stares, no one judges, and everyone gets it. That's what Friday gives them."
Kara, your father started this because of your grandparents. How does seeing him sing and play guitar for 120 people every Friday feel like a living tribute to the parents he lost to this disease?
My grandparents were both diagnosed with dementia in their 70s. It was extremely hard watching them both deteriorate. My dad used to take my nan and grandad to the local dementia café, which was when he started to get involved with volunteering with the club. When my grandad passed away, my nan found it extremely difficult, as did everyone. They were married for 65 years.
My nan found comfort in going to the dementia club, and my dad would pick her up every single week and take her with him. She absolutely loved seeing my dad do his thing — playing his guitar, singing, making everyone smile — and seeing how much joy it brought to so many people made her happy. When the time came and my nan could no longer stay at home, and we had to make the difficult decision to place her in a care home, my dad continued to go and run the dementia club and we used to play the videos to my nan.
Sadly, the day came when my nan passed away. We were all absolutely devastated, but one thing is for sure — and that is how proud she was of my dad.
After a period of grieving, my dad and the volunteers made the decision to find a new venue. The old venue was deteriorating, tired and no longer safe, and eventually my dad found a new place which was much brighter, bigger and overall much nicer. It was perfect for a new start, and that's when he decided to rename it 'The Dementia Friendship Club.'
Dementia can be a very quiet, isolating diagnosis. When the doors open on Friday and 80 to 120 people fill the room, what does that "wall of sound" and laughter do to the stigma these families face the rest of the week?
The Friendship Club gives everyone who attends a warm welcome and a happy, inviting feel. In a lot of circumstances, this place is a lifeline as it is the only time some of them can get out and be sociable whilst still feeling safe and not overwhelmed.
My dad makes sure the furniture is always in the same place and tries to keep changes to a minimum. All the members are so excited to go and really look forward to it. When I go and speak to some of the wonderful people who attend and ask, "What's your favourite thing about the club?" most of them answer with "Steve" — and how much he has helped them.
The amazing thing about this club is that it is open to those who have lost a loved one to dementia, and there's not many other dementia charity groups that do that. For those few hours, they can sit, talk, dance, sing, play bingo, try their luck on the raffle, play games, eat a hot meal, have a warm drink and just have fun.
This place is a lifeline. It's the only time some of them can get out and be sociable whilst still feeling safe and not overwhelmed.
— Kara LockyerWe know music can "wake up" the brain in ways medicine can't. Can you describe a time you saw someone walk in completely withdrawn, only to see them transformed once your dad started playing his guitar?
This is a bittersweet one. There was a lovely gentleman called Allan. Allan had been coming to the Dementia Friendship Club for so many years. He had severe dementia — no life skills, no communication. He didn't even know his own name. My dad observed him on a few occasions when he was singing in his group that Allan was singing along to some of the songs.
One night my dad was hosting a talent show for the members of the club whilst on one of the seaside trips he organises throughout the year. My dad asked Allan if he wanted to sing with him. Allan got up and stood beside my dad. The song "What a Wonderful World" by Louis Armstrong started to play. My dad held Allan's hand and, lo and behold, he knew every single word.
There was not a dry eye in the house. This was a very special moment for my dad and his wife. Sadly, Allan passed away earlier this year, and this moment is one my dad will treasure forever.
Your dad doesn't just perform; he raises the money, coordinates the food, and manages the logistics. What drives him to take on the "weight" of a hundred families' happiness every single week?
A simple answer — and that is his parents. My nan and grandad. Dementia takes no prisoners. He watched dementia, in his own words, "savage" my nan within a year. He watched them lose themselves and their dignity. My grandparents were very proud, independent people.
My dad wants to make a difference and help others in a similar situation. Not only for those who have dementia, but for those who care for someone with it. It is extremely demanding, and at times you feel like you're on your own with it. The club gives people an opportunity to make friends with like-minded people in the same boat.
While the members enjoy the music, the caregivers are in the room, too. How does this club serve as a "recharge station" for the spouses and children who are exhausted from the 24/7 reality of care?
"Conversation and comfort" are my dad's favourite words to describe the Friendship Club. Just for those couple of hours, those people who care for a loved one suffering this beast of a disease are in a place where they can take a break, rest, vent, and feel comfort in the fact that they are not alone — and that there are so many others in the same boat.
Many make genuine friends for life here. It's somewhere where you can come and know that no one will judge, and you don't have that worry of people staring.
Conversation and comfort. Those are my dad's favourite words to describe the Friendship Club.
— Kara LockyerThe club isn't just about entertainment — it's in the name. Friendship. Why is it so different for these families to be in a room where everyone "gets it," compared to being out in the general public?
Sometimes, when you are looking after someone with dementia, you can get a sense of dread when you have to go out in public — because a lot of the time people will stare, people will judge, and people will make unkind comments. And that's because they don't understand what dementia is.
The Friendship Club is a place where no one is judged because everyone is in the same boat. So no one cares if they make a mess, if they drop a spoon, if they spill a drink. And that is why it's such a magical place. Everyone just "gets it," and they all support each other.
Your dad pours his heart into this. How does he handle the "long goodbye" when regular members of the club eventually decline or pass away? How does he find the strength to keep playing?
My dad really does bond with all the members. He literally puts his heart and soul into it all, and they all absolutely love him. He does find it extremely difficult when he loses a member, as does everyone there. It's tough, but they all pull together and support each other.
He does it because of this reason — the support doesn't just stop when someone dies. The club still opens its arms to those who have lost a loved one, and that's what makes it special.
You are right there beside him. How has watching your father dedicate his life to this club changed your own understanding of what it means to "show up" for people in their darkest seasons?
My dad has taught me so much throughout the years. He has taught me what kindness and hard work really are. I have never seen anyone so determined and passionate. He never lets anyone down. He has fundraised in rain, wind and snow, and still today, at nearly 74 years old, he shows up.
He is the most kind, caring, loving man you will ever meet. I am so proud to call him my dad, and I love him very much.
He has fundraised in rain, wind and snow. And still today, at nearly 74 years old, he shows up.
— Kara LockyerAfter the music stops and the hall clears out, what is the atmosphere like? What does your dad say to you when the mission for that week is accomplished?
My dad packs away at the end of the Friday session. He puts the tables and chairs away, makes sure everything is clean and tidy, then he locks the doors and makes the hour-long journey back home. He sends me pictures and videos of the day. He feels a sense of achievement, knowing that everyone has had a fantastic day filled with laughter and love.
However, as soon as he is home and he's finished his well-deserved cup of tea, he's back organising the next session, the next fundraiser, and the next trip. He literally never stops.
There is constantly money needing to be raised, which is why I have started the TikTok page "My Dad the Dementia Hero" — to try and get him recognised for the amazing work he does and to help the Dementia Friendship Club by creating a GoFundMe page for donations. The link is in the bio.
What has this club taught you about the resilience of the human spirit? Does seeing 120 people find joy in the middle of a dementia diagnosis give you a different perspective on "hope"?
The club gives people confidence, social support and a purpose — all while dealing with a horrendous diagnosis. When you see so many people joined together as one big community, all going through the same journey, knowing the outcome will never be good… it brings me hope knowing that just for those two hours it could bring a glimpse of happiness, maybe lost memory back, and possibly even a song.
What makes the biggest difference?
ENHDME is a home care supplier for family caregivers. Since your dad provides so much for the club, what is something — a product or a simple tool — that you've seen make the biggest difference in keeping someone with dementia comfortable and engaged during these gatherings?
Music. It's as simple as that.
One piece of advice for a family afraid to bring their loved one out.
Looking back at the person you were before you saw the impact of this club — before the music and the hard-won wisdom — what is one piece of advice you would give to a family member who is currently afraid to bring their loved one out into the community?
Everyone is always nervous and scared trying something new, but unless you try it, you will never get the chance to realise what a wonderful community it is — full of support and love. Once you've taken that first step, as scary as it may seem, you will never look back. So please don't be scared. Just take one step at a time.
At nearly 74 years old, Steve runs The Dementia Friendship Club in Bolton, England — a weekly Friday gathering of 80 to 120 people affected by dementia. A guitarist and singer, he founded the club after losing both his parents to the disease. He spends every day of his retirement fundraising — singing on the streets, in supermarkets, organizing shows — to fund food, drink, entertainment, and seaside coach trips for members and their carers.
Steve's dream: to surprise every member with a fully paid 3-night hotel stay in Lytham St Annes. Until now, attendees have always had to pay for their own accommodation on trips.
Kara — Steve's daughter — started the TikTok page "My Dad the Dementia Hero" to share his story with the world and help raise the funds to make his dream a reality.