Marae-based mate wareware, dementia clinic extended

A groundbreaking marae-based mate wareware, dementia-care clinic established in Kaitaia has been hailed a success after its first six months and extended indefinitely.

The Centre for Brain Research, Te Huinga Hinengaro at Waipapa Taumata Rau, University of Auckland partnered with Northland iwi Ngāpuhi and Te Rarawa, and kaupapa Māori-led health organisation Te Hau Ora o Ngāpuhi to pilot the clinic aimed at assisting kaiāwhina, carers of people with mate wareware.

Director of the Centre for Brain Research Te Huinga Hinengaro Distinguished Professor Sir Richard Faull (Ngāti Rahiri, Te Ātiawa) announced the project’s extension at an 11 July event stating, “It’s not a textbook approach, it’s revolutionary.

“An ingredient for success has been found here on the marae that we cannot find in any lab.”

Dr Makarena Dudley (Te Rarawa, Ngāti Kahu), a long-time researcher of mate wareware, said the aim was to develop a culturally resonant model for kaiāwhina.

“Our goal was to create an environment that reflects whānau needs and allows them to guide us, rather than the other way around.”

Data show that carers for whānau with mate wareware frequently die before the person they are caring for.

The Centre for Brain Research returned to Roma Marae in Ahipara to extend the partnership after hearing powerful testimonies from whānau navigating mate wareware.

Some families are dealing with multiple cases simultaneously, making this support even more critical.

Whānau said it is essential to protect the mana of whānau, something the current health system does not understand.

The current diagnostic tools, often seen as interrogative and anxiety-inducing, have had negative effects on whānau, they said.

Whānau felt a marae-based approach was a safer option, praising the efforts of Te Hau Ora o Ngāpuhi and the Centre for Brain Research, Te Huinga Hinengaro.

Another whānau shared their experience: “It’s scary to go to an unfamiliar room with a doctor we have no relationship with – even if you don’t have mate wareware. It immediately becomes anxiety-provoking.”

“It would make such a difference for the doctors to come and see us or our whānau instead – like here at our marae.”

Dudley has also developed the MANA tool - the Māori Assessment of Neuropsychological Abilities tool - for diagnosing kaumātua with mate wareware.

It incorporates elements of te ao Māori such as wairua, checking the person’s spiritual well-being.

Many people also said the term ‘mate wareware’ maintains a person’s mana and removes the stigma of dementia, opening a positive dialogue about support.

Te Hau Ora o Ngāpuhi, Ngāpuhi and Te Rarawa will continue to receive support from masters researcher Zahra Cherrington-Irving (Ngāpuhi), Dr Makarena Dudley, Dr Waiora Port (Te Aupōuri, Te Rarawa), Professor Suzanne Purdy (Ngai Tākoto, Te Rarawa), Sir Richard, Matua Sonny Niha (Ngāti Hine), and others from the team at the Centre for Brain Research, Te Huinga Hinengaro.

Sir Richard says it is his hope to create more marae-based clinics across Aotearoa.

“It’s time we grow and embrace marae-based clinics for the future.”