How a chance meeting became a place to belong
- 4 days ago
- 6 min read
The unexpected story behind YODC's Retro Lounge
Sometimes change begins with a carefully crafted plan. Sometimes it begins with a chance conversation.
For the Young Onset Dementia Collective (YODC), the story behind our new Retro Lounge programme began with a simple email and a hope. Not a proposal for a new programme. Not a request for funding. Just a hope that one person living with younger onset dementia might be able to spend some time in a place that reflected who she was.
That person was Sandra. Before her diagnosis, Sandra enjoyed a long career in fashion, including many years travelling overseas. Like many people living with younger onset dementia, Sandra's interests, passions and identity did not disappear when dementia entered her life. Yet opportunities to engage with those interests had become increasingly limited.
YODC Lead Anne Logan reached out to First Scene, a Tamaki Makaurau based ‘Institution’ that has been part of Auckland's events and creative landscape for more than 40 years, wondering whether Sandra might be able to visit, explore fabrics, fashion and creativity, and spend time in an environment that felt familiar and inspiring.
What happened next was entirely unexpected.
"I remember that meeting vividly," says Anne.
"I walked in expecting I would have to convince Jo to let one person come in and spend some time around fashion and fabrics. I left buzzing about the opportunity and how just one person can make a difference for so many."
That one person was Jo Pilkington. A respected leader within New Zealand's events industry, Jo was appointed a Member of the New Zealand Order of Merit in the 2022 Queen's Birthday and Platinum Jubilee Honours for services to the events sector and the community.
Over many years Jo has supported countless organisations, community initiatives and charitable causes. Those who know her quickly discover that behind the impressive career is something even more significant: a genuine desire to help.
When Anne sat down and shared the realities of younger onset dementia, Jo listened. Really listened. And what she heard stayed with her.
"It was you," Jo says when asked what resonated most from that first meeting.
"I listened to your story and thought, my God, how fortunate am I that I haven't experienced this.
There is no rhyme or reason. That could be me sitting here being you."
Like many people, Jo admits dementia had largely existed on the edges of her awareness.
"We all make jokes about dementia," she says. "You walk into a room and forget why you're there, lose your car keys, and think, Oh my God, I've got dementia. Then you read an article about younger women whose symptoms were initially dismissed as menopause, and suddenly you think, should I be worried too?" Anne understands that fear all too well.
"Many women in our community have experienced lengthy diagnostic journeys because their symptoms were initially attributed to menopause rather than dementia," she explains.
"The things most people joke about, forgetting names or misplacing keys, are usually not dementia at all. But for those living with younger onset dementia, being heard and taken seriously can take years."
It was one of many moments during their first meeting where understanding deepened, misconceptions were challenged, and a simple request to support one woman evolved into something much bigger.
As Anne spoke about the challenges facing people living with younger onset dementia, Jo began to see something else. Not a problem to discuss. A problem she could help with.
"I'm a natural fixer," she says with a smile.
"And I thought, we can help with this."
As the conversation unfolded, Jo realised Sandra's visit was only a small part of a much bigger story. A story about people living with younger onset dementia who are too young for traditional aged-care services, yet struggle to find places where they truly belong.
Places that understand who they are. Places that reflect their stage of life. Places where they can simply be themselves. And then, in a moment that would change everything for YODC, Jo made an extraordinary offer.
She offered the free use of First Scene's Retro Lounge. Not for a one-off visit or a special event. For an ongoing weekly programme.
A place where people living with younger onset dementia could gather, connect, create, laugh, contribute and belong. A place that would become known as the YODC Retro Lounge.
For Anne, the offer came at exactly the right time.
"I talk to anyone who will listen," she says.
"Most people are well-meaning, but few really listen and even fewer respond the way Jo did. Often people have ideas, but they don't understand the realities of younger onset dementia. They don't understand the barriers. They don't understand why age-appropriate environments matter. What Jo offered was genuine. It was practical. It was something we could actually do."
For Jo, the decision felt natural. "I love this space," she says.
"I love designing environments where people feel comfortable. The question for me has always been: what difference can I make?"
That difference quickly grew beyond the walls of First Scene. Jo tapped into her own networks. Local businesses stepped forward. Furniture, supplies, resources and support began arriving. The Rosebank Business Association embraced the initiative. People shared their own personal experiences with dementia.
Connections were made. Conversations started. A growing community gathered around an idea.
As Jo puts it, "So many people have been touched by dementia. Until you start talking about it, you don't realise how many."
Today, the Retro Lounge stands as a reflection of everything YODC believes support should be.
Not a programme. Not a service. A place to belong.
A place where people living with younger onset dementia can enjoy music, conversation, coffee, creativity, films, entertainment, themed activities, movement, connection and friendship.
A place where carers can take a breath knowing their person is somewhere safe, welcoming and understood. Most importantly, a place that feels like theirs.
When asked what she hopes the Retro Lounge becomes, Jo doesn't hesitate.
"I would love people to consider it their second home. Their home away from home. I want people to feel safe in the space, enjoy being there and look forward to coming. I want them to feel ownership of it. Not like they're sitting awkwardly in a corner wondering if it's okay to be there. I want them to feel like it's theirs."
Then she pauses and smiles.
"The whole point is to have fun. If it's not fun, why do it?"
As YODC prepares to officially launch the Retro Lounge, we're reminded that meaningful change doesn't always come from government strategies, policy documents or large funding announcements.
Sometimes it starts with a conversation. A willingness to listen. A decision to act. And one person who chooses to open a door.
Thank you, Jo. Thank you to the First Scene team.
Thank you to the businesses, supporters and community members who have already stepped forward.
Because of your kindness, a chance meeting has become something much bigger.
A place where people living with younger onset dementia can continue to connect, contribute and belong.
And perhaps that is the most powerful kind of change of all.
About Jo Pilkington
Jo Pilkington MNZM is one of New Zealand's most respected event professionals and community champions.
In 2022, Jo was appointed a Member of the New Zealand Order of Merit for services to the events sector and the community. Throughout a career spanning decades, she has worked with professional, community and voluntary organisations across New Zealand, helping people bring ideas, causes and communities together.
From mentoring future event managers and supporting local organisations to championing community initiatives and charitable causes, Jo has built a reputation for seeing possibility where others see obstacles.
Those who know her describe her as a problem solver, connector and someone who quietly gets things done. As YODC would soon discover, those qualities would prove transformational.
About First Scene
Established over 40 years ago, First Scene is recognized as having Aotearoa’s largest selection of costume and party props with over 400,000 items in stock. Many items have featured in local and international films, national theatre productions, television commercials and of course thousands of parties and celebrations around the country. The First Scene team's creative experience and wide ranging backgrounds enables them to offer the best support possible to ensure projects, events or productions are the talk of the town!
What Is The Retro Lounge?
The YODC Retro Lounge is a new community-based programme for people living with younger onset dementia.
Operating from First Scene's Retro Lounge in Rosebank Road, Avondale, it offers something that is surprisingly difficult to find: an age-appropriate place where people can simply spend time together without feeling like they have been pushed into an aged-care model that doesn't reflect who they are.
The programme has been designed around connection, contribution, choice and belonging.
Participants can enjoy:
Music and themed activities
Coffee, conversation and companionship
Arts and other activities for the creative, curious and artistic types
Films and shared entertainment
Sports and shared interests
Space to relax, laugh and be themselves
Opportunities to contribute and help shape the programme
Most importantly, the Retro Lounge is not built around what people have lost. It is built around who they still are.
As Jo says, her hope is that people come to see it as "their second home", a place where they feel safe, welcome, understood and genuinely connected.
For YODC community and whanau, that's exactly what makes it so special.
