Kaumātua with dementia are often misdiagnosed and mistreated, says Dr Makarena Dudley, a doctor who specialises in their care.
In this conversation with Siena Yates, Makarena talks about how she’s drawing on te ao Māori to change that.
Our strength as Māori lies in the healing aspects of our culture.
We’ve found in our research that many of our whānau don’t necessarily see mate wareware, or dementia, as a bad thing. Rather, it can be seen as a spiritual journey, where a person is in a tapu space between this world and the next.
For example, certain types of dementia can create hallucinations and delusional behaviour. But for some of our kaumātua, who acknowledge communication with tūpuna on the other side, these things aren’t negative symptoms. They’re seen as part of the journey to join their tūpuna.
This is a wairua way of thinking, rather than a medical deficit-based approach. It takes a more positive view than just “this is a horrible disease to have.”
That’s not to discount the fact that mate wareware can be an awful thing for many whānau to deal with. But we try to come from a strength-based place in our work to help them.
I’ve been doing this mahi for about 10 years now. My background is in clinical neuropsychology which I did for about 20 years. This field of mate wareware really appealed to me because, well, who doesn’t want to work with, and for, our kaumātua? They’re such a taonga.
It’s also an area of Māori health that’s under-researched and under-resourced, with very few Māori practitioners, so I knew there was a big gap that needed filling.
I got into it after I met Professor Ngaire Kerse at a conference. She’s an international expert in bicultural ageing — and she told me about LiLACS (Life and Living in Advanced Age), which was a major study on octogenarians in New Zealand. It found that Māori were being misdiagnosed because the commonly used tests for dementia are standardised and based on a western population.
The kaumātua were being asked the wrong questions. There was no cultural context, no mātauranga Māori, no relevance to the kaumātua being tested.
Countless kaumātua have told me that what they wanted more than anything from their clinician was to be asked about their wairua, how they were spiritually, because that was the most important aspect of their health. But, of course, they never get asked those sorts of questions.
This had been happening for years and years in Aotearoa New Zealand.
If we look at mate wareware from a Māori perspective, we know our beliefs and values can protect us and provide a different way of being. Listening to our kaumātua, I realised there are methods of healing, management and treatment that we could bring in from te ao Māori.
So we’ve been working on a diagnostic tool for mate wareware for Māori. It’s called the MANA tool — the Māori Assessment of Neuropsychological Abilities tool. And it’s about to be rolled out to primary healthcare providers and hospitals around the country.
We’ve included the usual, standard cognitive and functional assessments, but we’ve developed it within a Māori context. It asks our kaumātua questions about their self-identity, how they perceive themselves, their relationships with mokopuna, whether they’re able to manaaki people like they used to, and the places that are important to them. That is, it includes a wairua component.
Something that we’ve found, which Māori should be so proud of, is that many aspects of our culture provide proven protective factors against mate wareware.
During our research, we interviewed at least 400 kaumātua about their experiences of mate wareware. Out of that kōrero came a list of things that helped kaumātua with mate wareware. Like being active on the marae, and hearing and reciting karakia and waiata.
All those things link back to the protective factors that have been identified in the western world. If you’re on the marae, you’re being social, you’re communicating, you’re talking, you’re listening. There are lots of things going on in your brain. For instance, saying a karakia triggers and activates neurons in the brain that may not normally be activated if you aren’t using the reo. It’s the same with singing waiata.
These things in themselves aren’t necessarily going to stop you from getting mate wareware but collectively they can help to minimise the onset or slow down progress.
The marae is also important because we know that people with mate wareware like to be in an environment that’s familiar to them. They’re able to function better because it’s a place where they feel safe and where they feel aroha.
I can’t even tell you the number of stories I heard about kaumātua and kuia who were known to have mate wareware but when they came to the marae it was like it just disappeared.
Whānau would say things like: “Oh, we didn’t have to worry about Aunty Dolly for that period of time because she was just like normal, and she was able to do everything she normally would.”
There were also stories of people who started speaking the reo even though they hadn’t spoken it for most of their lives. It may have been suppressed since they were five, if they’d been punished for it, but the reo, as their first language, was still there. It doesn’t go away. It just lies dormant.
That’s a wonderful wairua experience that can happen to our kaumātua, but what’s also happening is that, as the disease progresses, the pathways that generate new memories die off first and the pathways that access old, long-term memory become more active. So, they can access those long-term memories of the reo, which is pretty spectacular.
The reo is another huge strength of ours. Being bilingual, or multilingual, is certainly a protective factor against mate wareware because when you’re using another language, you’re activating more pathways in the brain.
This is really exciting news because we know that these kinds of protective factors, together with a healthy lifestyle, can delay or prevent the onset of mate wareware by up to 40 percent, which is huge.
This is the sort of information we need to get out to whānau. A lot of our health and wellbeing lies in having a positive connection with our culture.
It’s so empowering for Māori that there are things that we can do to help ourselves without relying on a purely western approach. Because, let’s face it, western science and medicine haven’t always helped our people.
We’ve also recently launched a form of cognitive stimulation therapy that comes out of te ao Māori, called Haumanu Whakaohooho Whakaaro Māori. It includes the protocols and tikanga that we observe in Māoridom.
For example, there’s a session on food. We ask the kaumātua to bring in some traditional kai like mutton bird or kānga pirau (rotten corn) for a shared kai. And those tastes and smells will trigger memories from their childhood.
Another session is on sounds. We get Māori musical instruments, native manu sounds, karanga recordings — and they’ll also help to trigger memories. We look for activities that primarily stem from te ao Māori.
We also use things that come from te ao Pākehā because a lot of our kaumātua are very familiar with the western world as well. But it must be relevant and of interest to them.
We’ve run two pilot groups in Whakatāne and Ōpōtiki and it’s been very exciting. There’s been excellent anecdotal feedback from whānau about the improvements that they’ve seen in their loved ones.
There’s a huge amount of interest in this kaupapa. When we did our initial interviews for the research, we hoped to kōrero with about 20 kaumātua at each marae. But we’d often get triple that.
People not only really wanted to talk, but they wanted to listen too. There’s not a lot of information out there about mate wareware, and we realised that some of our kaumātua and kuia are frightened by this condition because they just didn’t know much about it.
Generally, Pākehā tend to avoid talking about dementia. And I think the difference with Māori is that we’ve been through so much in our history that this is just another hurdle to deal with.
Māori are used to adversity, and we take it in our stride. That’s what I’ve seen with our kaumātua. They’re like: “Okay, what’s this? What’s the latest? Tell us about it and how we manage it and what the whānau need to know.”
That last bit is especially important because we know that Māori generally prefer to keep someone with mate wareware at home to look after them for as long as possible. That’s why we don’t have a lot of Māori in aged residential care.
My mum died of bowel cancer 20 years ago. When she got sick, she was bedridden but adamant that she didn’t want to go into hospice care.
I think there was a bit of fear because it’s not culturally-sensitive care. She’s not going to get her boil-up for dinner. She’s not going to get her kaimoana. She’s not going to be surrounded by people who speak the reo which is medicinal and healing, in itself.
It’s a foreign place for a lot of our kaumātua. So it’s an instinctive thing for them to want to stay at home in a familiar environment. Keeping our kaumātua at home is another part of caring for their wairua.
I’ve realised how important these things are because I was brought up basically as a Pākehā. But that changed when my Pākehā dad died. I mean, overnight, Mum went back to being this Māori woman who I barely recognised. The reo became her main language and she moved back home to Te Tai Tokerau where she was the kuia on our marae.
That was so exciting for me. This new world opened up to me, and ever since then I’ve been closely connected to my marae. One of the things I really fell in love with about being Māori was the kaumātua and kuia.
I used to sit there on the marae and watch them and listen to them. It was just the most beautiful thing. And it made me think: “Wow, I’m just so privileged to be Māori.” I developed a reverence for our kaumātua — and I have to say, particularly for our kuia, who sit in the background full of wisdom, full of aroha for everybody. It blew my mind.
You know, I get so angry when I read all this negative stuff about our people, and I think: “You have no idea of the beauty that’s in our culture.”
Now, we’re able to use that beauty to help our kaumātua, which is pretty special. So, I feel really honoured to be doing this work.
Dr Makarena Dudley (Te Rarawa, Te Aupōuri, Ngāti Kahu) is a clinical neuropsychologist who has spent the past 10 years focusing on dementia in kaumātua Māori. Her team has developed the ao Māori focused MANA testing tool for diagnosing, and cognitive stimulation therapy (CST) for helping manage mate wareware. The MANA tool is due to launch later this year, while the CST workshop and manual are accessible now. For more information, you can contact her at email@example.com.
As told to Siena Yates, made possible by the Public Interest Journalism Fund.
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