When someone walks into a young onset dementia group for the first time, there’s often a moment of hesitation. The room may be filled with strangers, but within minutes the conversation shifts to the familiar: work, family, the frustrations of the week – and the laughter that follows. For many, it’s the first time they don’t have to explain themselves.

Young Onset Dementia – a diagnosis before the age of 65 – brings challenges at a very different stage of life. People may still be working, raising children, or supporting elderly parents. The need for welcoming spaces where people can share experiences and enjoy each other’s company is clear.

In Auckland, Waikato, and Hawke’s Bay, dedicated young onset dementia groups supported by Dementia New Zealand Network services are providing exactly that. Activities are chosen together, friendships are built, and laughter is often at the heart of it.

Andrea Yates, Dementia Advisor with Dementia Auckland, says the most important thing people find is belonging.

“People walk in thinking they’re the only ones their age facing dementia. Then they realise others understand exactly what they’re going through. That sense of relief is huge.

“We meet every Wednesday from 10am to 3pm. We start the day with orientation – day, date, time and place, and then a cognitive stimulation session – reading a news article, having a discussion about that, doing word or number exercises, and usually going for a walk. It’s a space where people feel safe, understood, and supported in a way that recognises the unique challenges of younger onset dementia.”

The focus is not on a set programme but on people shaping what matters to them. Research shows that staying socially connected can improve wellbeing, reduce isolation, and even slow decline – but for participants, the benefit is felt in simpler terms: enjoying time with friends who “get it.”

In Waikato, one participant describes the group as a lifeline:

“It’s good to be around people who get it – you don’t have to explain yourself. You can just be yourself.”

Dementia Advisor Janine Mair says this is the strength of the group.

“People talk about a variety of topics, and there’s plenty of humour too. It’s about supporting each other in ways that feel natural.”

For care partners, these groups bring reassurance too. Knowing that their loved one has a safe and enjoyable place to go can ease stress at home. It also creates breathing space – a chance to catch up on work, rest, or simply have time for themselves.

In Hawke’s Bay, the young onset group has been running for more than four years. Members have tried everything from pottery and art therapy to exercise sessions and visiting a craft brewery. They most often finish with coffee and kōrero.

Katrina Simmonds, Community Liaison at the Mahana Centre, says: “We want people to feel seen and heard. The group gives them a chance to laugh, talk about challenges, and also celebrate what’s still possible. It’s also a chance for friendships to develop outside the group.”

What links all three groups is a sense of community. As one Waikato participant put it: “You can just be yourself.”

If you or someone you love is living with young onset dementia, ask your Dementia Advisor whether a young onset dementia group could be right for you.

Read more about the young onset dementia group in Hawke’s Bay – Good Companions.