A $1.1 million study is being conducted by Dr Makarena Dudley of the University of Auckland-Waipapa Taumata Rau to determine the prevalence of mate wareware (dementia) among Māori.
Dr Makarena Dudley says there's a lot of stigma and negativity associated with the term dementia. Photo: AFP / Ole Spata / DPA
Dudley is a neuropsychologist with a long history of researching the condition and advocating for better care.
Current statistics show Māori accounting for 6.2 percent of Aotearoa's population who live with mate wareware - amounting to 4306 of 70,000 people - according to the 2020 New Zealand Dementia Economic Impact Report.
The word dementia often brings up incitement of fear and despair among Māori, given it is a Western, post-colonial term.
In addition, the research around Māori who have suffered from the illness is slim to none - with no quantitative studies being conducted in recent years.
As part of the study, titled "He raupunga hauora mō te ware wareware," Dudley and her team discussed with about 300 kaumatua the usage of the word dementia in relation to the research.
"They didn't like the word dementia, because it's associated with a lot of stigma and negativity," Dudley said.
They found that the term most commonly used amongst iwi around the motu was mate wareware, with mate referring to being sick, and wareware translating to forget or to be forgotten.
Other terms, such as pōrangi, meaning mad, and rorirori, meaning crazy, were also used throughout the motu, Dudley said.
Dudley said there was a significance in using kupu Māori to describe dementia when it came to dealing with Māori individuals.
"When you say mate wareware, it doesn't have those negative connotations or associations that the word dementia has."
The study will be conducted over the next three years, starting with door-knocking in five parts of New Zealand with high density population of Māori - such as Auckland, Hamilton, and Christchurch.
It is the first indigenous-led inquiry into mate wareware in the world - a milestone for Dudley and the University of Auckland.
Five hundred and 50 residents in these areas aged 65 and over will be interviewed and assessed for mate wareware, in the hopes that more conclusive evidence will prevail regarding the population of those living with the condition.
Dudley hoped that once completed, the research would provide opportunities for more equitable healthcare for Māori with mate wareware, and an eventual movement towards culturally competent and appropriate healthcare for Māori across the board.
"Māori understand the condition differently - therefore the management and treatment of the condition must be different," she said.
"Even the tools that are used to diagnose mate wareware are quite often inaccurate, because they lack cultural validity."
The study would contribute to a space for not just Māori, but for everybody to learn about mate wareware from a Māori perspective, Dudley said.