Dr Makarena Dudley. Photo: University of Auckland / Supplied
Too many rural Māori whānau are caring for loved ones with dementia - or mate wareware - without support, diagnosis or the information they need, according to two leading brain researchers.
Sir Richard Faull, director of the Centre for Brain Research at the University of Auckland, and deputy director, Māori, Dr Makarena Dudley, say Māori and Pacific people are affected by dementia more than any other group.
They spoke to Nine to Noon about travelling around the country visiting marae sharing information and hearing stories. So far they've held hui at marae in the Far North and Whanganui, and more are planned.
Dudley said the goal is to reach out to all Māori communities, particularly those in remote areas, to share information about the condition and gather the kōrero of caregivers.
"Some of these caregivers are desperate for support, they're caring for sometimes loved ones who are exhibiting very challenging behaviours. Looking after somebody who has mate wareware particularly in the more severe stages of the condition can be extremely challenging and often even amongst Māori families that responsibility is often left to one person."
Providing support for caregivers is one of the major parts of this program, Dudley said, many are isolated in rural areas and don't know where to turn to for help.
"There was an international study done actually across a number of nations that caregivers often die more than the person they are tending to."
Aotearoa is in the midst of conducting a nationwide prevalence study, which has another year to go, but once it's finished there will be accurate data about the extent of dementia among Māori, she said.
The goal of travelling around to marae is to reach out to all Māori communities to give them information about dementia and listen to their experiences with the condition, she said.
"Then we can take that information back with us and decide okay so here are the issues, here are the problems, how are we going to address this, how are we going to help to fix this and so we've visited around about 25 marae so far. .. we've spoken to hundreds of kaumātua, we've listened to their stories, some of them quite heartbreaking.
"One of the main themes that's come across from all these visits is that there is a profound lack of information available to the Māori community and more so for those who are living more remotely not only is there a lack of information but there are virtually no services available to them."
The Centre for Brain Research is currently funding a program to support caregivers in Ahipara, Dudley said so far its been a success and it's service that doesn't require a lot of funding.
Dudley has also helped develop an app to help Māori affected by dementia. The app provides all the basic information a whānau might want to know about dementia, she said.
The app provides all the basic information a whānau might want to know about dementia. Photo: supplied
Faull said the ethos of the Centre for Brain Research is not only to do research but communicate that research to people and then listen to them.
Faull said it's a privilege to go out to marae to listen to people and put that ethos into action.
"We are actually seeing an absence of services in so many ways, this is for Māori and non-Māori, but especially for Māori so that's why it's important for us to go out and tell them about the risk factors."
If you address the risk factors you can reduce the prevalence of Alzheimer's by about 60 percent, he said, so communicating that to people on the ground is vitally important.
Sir Richard Faull. Photo: University of Auckland / CBR
Dudley said when developing a model for treating dementia that resonates with Māori they need to use the information from both knowledge bases, western science and mātauranga.
"They need to know information from both worlds."
"Because there is a lot of information out there now but Māori don't really buy into it, it doesn't resonate with them because its not in their speak, it's not familiar to them the language that is used the way it is introduced to them."
The Centre for Brain Research is currently working to produce a model that works for Māori, she said, once that happens she believes progress will be made in reducing incidents of dementia.
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