Maintaining dignity in 'the longest goodbye'

I’m noticing familiar road markers roll by as we head south from Tāmaki to Rotorua. Before becoming an academic I worked as a courier driver. That job taught me two things I use every day as a researcher: how to find my way to people, and how to meet them where they are.

Recently we visited Te Papaiouru (Ōhinemutu) marae in Rotorua, and I was reminded why those lessons matter. Almost 90 people, kaumātua, whānau carers, clinicians and healthcare workers, filled the whare to talk about mate wareware (dementia), to honour loved ones, and to share the raw, practical wisdom it takes to keep dignity intact at home.

Our Centre for Brain Research team went with plain‑language brain‑health kōrero, clinical expertise, and a commitment to listen. This marae‑to‑marae kaupapa exists because too many Māori whānau are carrying the burden of mate wareware without timely diagnosis, information or support, especially in rural communities. Taking the kōrero to the marae is our way of closing distance, geographic, cultural and emotional distance, and ensuring that what we know about the brain, particularly in relation to mate wareware, is accessible and culturally grounded.

Whānau shared their stories, with tenderness, without flinching. One kuia spoke about “life in reverse”, the way skills are gradually unlearned until people need help feeding or swallowing. Another acknowledged the “longest goodbye”, the heartbreak of watching a loved one recede even while they are still with you. What those kōrero also held was resilience: the careful rosters for bathing and meds, the laughter that defuses tense moments, the collective resolve to keep loved ones at home for as long as safely possible.

We talk about mate wareware rather than dementia for a good reason. A decade ago, through nationwide hui with kaumātua and iwi, mate wareware emerged as the most acceptable kupu – a term that names “the illness of forgetting” without importing the stigma that clings to the English word. Language shapes care: when whānau can talk in their own terms about what they are seeing – memory loss, disorientation, word‑finding difficulty, shifts in mood, and wairua‑related changes – they seek help earlier and support each other better.

Māori are disproportionately affected by mate wareware and, on average, develop it earlier. The reasons are complex and cumulative: over‑representation in risk factors such as cardiovascular disease, diabetes and stroke; delayed or missed diagnosis; patchy access to culturally safe assessment; and the realities of caring in communities where formal services are thin on the ground. These are not abstract inequities; they are the pressure points whānau have described to us in more than 20 marae visits across the motu.

Hui like Friday’s are about manaakitanga in action: listening, informing, and connecting whānau to help. We also need better data to drive system change. Our team is part‑way through a prevalence study to understand how many Māori are living with mate wareware and where the needs are sharpest. When those numbers are clear, we can go to government and service planners with evidence that reflects Māori reality, not assumptions imported from other populations.

Research, however, requires more than counting; it is also creating tools that fit. I have adapted cognitive stimulation therapy for Māori, the first of its kind here, embedding sessions in Māori environments with activities that prompt language, memory and connection. It’s not a cure; there isn’t one. But it is a way to slow decline, lift mood, and support whānau to keep caring in ways that honour identity.

What gives me hope is what happens when scientists and whānau stand side by side. Sir Richard Faull spoke about the whānau who entrusted him with their mother’s brain decades ago, asking him to “find out why” so their kids wouldn’t suffer the same fate. That gift set a trajectory for New Zealand neuroscience and underpins our approach today: science progresses faster and more ethically when guided by people’s lives.

Professor Hanneke Hulst, our new CBR director and a leading MS researcher, joined us for her first marae visit and pōwhiri at Te Papaiouru. The symbolism matters: leadership sitting with whānau, hearing carers describe the load they carry, and committing to brain‑health equity that is built with (not for) communities.

Still, outreach is only one lane on the road. The other lane is growing our own. We urgently need more Māori and Pacific rangatahi to consider neuroscience, neuropsychology, and clinical brain‑health careers.

But why would they choose a field seen as an ‘old person’s disease’? Because our whānau need specialists who carry reo, tikanga and wairua into the lab and clinic. Because equity requires power in the pipeline as much as compassion at the bedside. Because each time a young Māori scientist steps into this space, the future of mate wareware care in Aotearoa shifts.

If you are a whānau carer, know that you are not alone. If you are noticing changes, such as forgetfulness that disrupts daily life, confusion, word‑finding trouble, mood or behaviour shifts that concern you, see your GP or Māori health provider and ask directly about a memory assessment; bring someone with you and take notes.

Every trip back down these roads reminds me that our work is not to lift whānau out of their world into ours, but to meet them on their marae, on their terms, with knowledge that belongs to them as much as it does to any textbook. The road between the lab and the wharenui is shorter than it seems when you drive it together.

Nāku iti nei, nā