Young onset dementia (YOD) doesn’t wait for retirement. It arrives when someone is still working. When children may still be at school. When the mortgage still needs paying. It interrupts a life that is still in full motion.

Too often, the services available were never built for that stage of life.

More than a decade ago, a small group of Wellington clinicians and people who had experience of YOD in their families saw this clearly. Younger people with dementia were being directed into environments designed for those twenty or thirty years older – lounges and programmes built around retirement, not midlife. The fit was wrong. The distress was real. There was no dedicated national source of information for families trying to make sense of it.

So, they built one.

The Young Onset Dementia Aotearoa Trust (YODAT) was established to address the absence of age-appropriate services and to provide guidance for people living with YOD and their whānau. Its goal remains clear: people with YOD should retain belonging, autonomy, and meaningful activity for as long as possible.

A place built for midlife

In Wellington City, YODAT runs a two-day-a-week programme for people living with YOD. Cognitive stimulation therapy sits alongside structured activities that reflect mid-life adult interests and abilities. A cooked lunch is shared. Conversation is part of the day. Twelve people currently attend, aged 54 to 80. The youngest person to have attended the programme was only 39.

The programme exists because younger people do not stop needing purpose when they develop dementia.

Research shows that unfamiliar, institutional settings can heighten distress for this group. Age-appropriate services are not optional. They are necessary.

YODAT has never intended this work to remain in a single city. They freely share what they have learned with others seeking to develop similar responses in their own communities, including Dementia Auckland, providing advice to set up their own day programme.

When you live outside the main centres

Not every family can attend a weekday programme. Some live hours from a major centre. Some are still in full-time employment. Some are still waiting for a diagnosis, unsure how to move forward.

Through its website, families can submit questions and receive guidance. Many enquiries relate to diagnosis and referral pathways – it’s all too common for younger people to encounter delays in primary care or uncertainty about how to access specialist assessment. Early, clear advice can prevent months of delay and uncertainty YODAT also runs national online support groups.

There is a group for people living with YOD, facilitated by Alister Robertson QSM, who has lived with YOD since 2014. There is an online group for whānau supporting someone at home, and there is a separate group for whānau whose loved one is living in residential care.

They meet at weekends. The timing is deliberate. It recognises that many care partners are still in paid work. It removes geography as a barrier.

Emma Fromings, YODAT trustee, says the decision to separate the two whānau groups came from listening closely.

“We realised very quickly that families at different stages were carrying different questions,” she says. “If your partner is still at home, you’re managing safety, routines, finances, and work. Once someone moves into care, you’re dealing with a completely different set of decisions.

“When someone moves into care, the enduring power of attorney is usually activated. You become the decision-maker. That can feel enormous. You’re trying to advocate well. You’re trying to get it right. And you’re holding grief at the same time.”

She has also seen what happens to social networks during the final stretch of intensive caring.

“By the time someone goes into care, families often realise their own world has narrowed. Friends have drifted. Life has shrunk to the essentials. The online group gives people a place where they do not have to start from scratch. Others already understand.”

These groups offer more than conversation. They offer practical information about progression, communication with care facilities and navigating legal responsibilities. They provide clarity as well as companionship.

Part of a wider response

YODAT works within the broader dementia community, focusing specifically on younger people and their families. Its national model complements regionally delivered services and helps address the uneven access that families can experience depending on where they live.

For some, especially outside the main centres, the online option may be the only specialised support available.

Emma is clear about what she wants people to hear.

“I want people with young onset dementia and their families to know that wherever they are in Aotearoa, support is there,” she says. “You might not have a group down the road. But you can reach out. You can ask the question. You don’t have to struggle alone.”

For the partner who is still working, still parenting, still trying to hold a household together, that can be a lifeline. Families can find information or ask a question via the YODAT website.