*
(AMBIENT MUSIC)
Copyright Able 2018
All right, Mum? Yeah. All right.
Mareae is one of thousands of Maori living with dementia.
With an ageing population, dementia is going to be a major health issue for all New Zealanders.
Excuse me. Yeah?
How about helping me...
with the peeling of these? Because it'll take a while. OK, then.
This is how we work...
as a family. We work together.
Why not use the chopping board, Mum, so you don't cut yourself?
Just put the potato down.
Is that better?
Mareae Cusack is 83. Her dementia came on as the consequence of a stroke.
So we, um— When we went to the doctor's yesterday,
um, so Mum doesn't actually know our names, but we're her daughters and sons.
And, um, she talked about, 'My brain's just not working.'
You know? 'Why can't—?' You know, 'Why don't I know this?'
And she goes, 'My brain's just funny,' you know?
And so, you know, that sorta brings a tear to your eye, really.
Dr Margaret Dudley is the head of a research project at Auckland University,
developing tools to better diagnose dementia in Maori.
The tools include helping Maori patients and whanau better understand and manage dementia.
What we are developing is a tool that is informed by matauranga Maori.
It's built on the korero, on the whakaaro of our kuia and kaumatua throughout the motu.
So we're not making this up. We're not saying, 'This is what is good for you.'
They have already told us.
What we're doing is just putting it into a package so that the Pakeha clinicians out there
can utilise it when working with Maori clients.
Like, Mum's sorta gone to become a toddler again.
You know? And it's... And there's nothing wrong with that.
And I suppose— Cos I'm an expert, eh, Mum (?)
Yeah. Do you think I'm an expert? (LAUGHS)
Do you think I've got good patience? Get the water into that soon.
So there are a number of symptoms that can appear for people with early onset dementia.
So, at first, maybe confusion.
Where's the pot to...? You've got it there, beside you.
Oh, sorry. That's all right.
Having memory difficulties; not being aware of where you are; getting lost —
those are the symptoms that may indicate early dementia.
They are aware that their faculties are, uh, progressively getting worse,
so there can be depression, anxiety associated with early dementia.
As the disease progresses, usually insight is lost, so you will see change in personality,
people can become aggressive, people can become more forgetful. New memories are lost.
With Mum's stroke, it didn't affect her physically,
but it affected her recent memory and her eyesight —
so Mum's very tunnel vision.
I live with my children and grandchildren,
and, um...
I think I've got a good team in my family.
I treat them the same.
That's my children. I love them all.
Her doing the dishes is her supporting the family.
Prior to her dementia kicking in to that next level,
she used to do the washing. And that was part of her being part of the whanau.
Mum would say to us, 'Oh, have you got any spare pillows? I've only got one pillow, but I need two more,
'cos I've got friends coming over tonight to stay in my bed.'
And I'm like, 'OK, well, who are they, Mum?'
Those became more and more frequent.
It's a huge burden on the whanau, particularly in the early days of diagnosis,
and when the person is in the moderate stages of dementia,
it can be hugely taxing on the whanau.
So what we hope to do is to provide some information on how to cope and how to manage this burden.
My day starts at 8. And so I've left the house at quarter to 8, and Mum's caregiver comes in at 9.
So Mum's pretty much home alone for an hour.
Hi, Mareae!
Hi. How are you? All right? Good, thank you.
Hi, Tui. Hi, Karen. How was your afternoon? Yeah, not too bad.
Yum sausages for tea. Yep.
All right, Mareae? Yep.
Having a caregiver allows Tui to work and keep Mum at home.
I'm actually a homecare support worker.
I have other clients as well, but I'd say Mareae is one of my favourites.
I'm not allowed to have favourites, but, yeah, she is. (LAUGHS)
You're going to your course tomorrow, aren't you?
The Seadrome — the dementia meetings that you go to every Thursday.
Really? Tomorrow? Yeah, tomorrow.
Cos I pick you up at 1 o'clock.
Oh, we talk. We have a laugh. (CHUCKLES) And we share... share our...
share everything, you know? I think we're pretty close. (CHUCKLES)
We really get on well now. So we understand each other.
So it's really neat. Good learning curve for me, though. I've learnt a lot.
(UPBEAT A CAPELLA MUSIC)
Margaret is also collaborating with a team of Maori experts.
They're working on developing a comprehensive theory of Maori and dementia.
The brain's a bit shrunken around the edges there. Oh yes.
They've had a small stroke here. A small stroke there?
So that's the black part of the brain here. Right. OK.
This is one of the standard things that we order for people to see whether we can identify
what the underlying cause is.
Dementia can be a result of any disease or condition that causes a permanent decline
in a person's ability to reason and remember.
It occurs when healthy brain cells stop working.
Dementia is not a condition that automatically comes with age.
On this particular scan, you can see that there is some atrophy at the front of the brain.
Yes. 'Atrophy' meaning the front part's shrunken down.
So this is a person with dementia? Yeah.
In a younger person, you wouldn't expect to see this black.
Black is just water around the brain. So the grey part is the brain itself.
The grey part's shrunken down away from the skull, which is white around the edges.
So this is a scan of a patient who is how old? Yeah, they're 82.
These fine things you'd describe as mild to moderate atrophy in the front part of the brain.
(SOLEMN MUSIC)
TUI: So, we're playing Kitty or poker?
'The way the doctors explained it is she's had her stroke, and because her brain has been damaged,
'that's why dementia kicks in quite quickly.'
GIRL: I don't know how to play. It's like poker. It doesn't matter. Just pick it up.
Do you know the game? No. (LAUGHS)
So you pick a card up...
They call it like stairs, you know? You only go down; you never come back up.
So Mum had had her stroke, and me and my sister were there when the doctors came in said,
'This is what's happened to your mother.'
(LAUGHTER) Are you cheating?
No!
You know, they used all the doctor talk, or doctor language,
and they left, and then I said to Naomi, 'Did you actually understand any of that?'
And she goes, 'Um,... no.' (LAUGHS)
And so we actually thought, 'Actually, that's quite rude.'
Cos they gave us all this jargon, and then they wanted us to syphon through it
and then come up with questions.
And we both were like, 'Um... Yeah, we need to think about that one. Can we come back to you?'
(MYSTICAL MUSIC)
To help people like Tui understand what dementia means,
Margaret is going to AUT to develop a phone app
to provide clear and accessible information.
The purpose of the phone app that I want us, as a team, to develop is so that we can inform whanau,
inform Maori about what they can do in terms of this fight against dementia.
So it's aimed at not only whanau who are suffering with this disease or living with this disease,
but also, uh, whanau who don't have the disease.
Because if we give them enough information and they put into action that information
and that kind of knowledge, then they can actually—
we can actually work towards preventing the onset of dementia,
putting that power in their hands to make a difference to their future, in terms of warding off dementia.
As a Maori, like, it's very hush-hush how we deal with things,
and it's good to be able to talk about things like dementia
and mental health and stuff like that with whanau.
We know our whanau access Facebook and social media, and so that's why we thought a phone app
for disseminating this kind of information would be ideal for our whanau.
Have one of you got any examples of what this app might look like?
With the app that we did, um, for this marae, we did— so, like— there's different—
So here's our home page. And then you can go into Maori protocols; you get Maori waiata.
We have little buttons that you can push that do audio for the waiata,
and then you also have the words in both Maori and English.
And then even some of them have a little video. That's wonderful.
This is knowledge and information at your fingertips.
It's pretty much how I envisaged it — colourful, engaging.
You can update it any time too — additional videos or information. Yeah, wonderful.
The course of dementia, in fact, starts many years before it is diagnosed,
so we want to provide this information so that whanau can be proactive
and can actually take control of their life path in terms of this condition.
(JOVIAL WHISTLING MUSIC)
Mareae goes to a day programme once a week.
It's held at Seadrome, a residential hospital for people living with dementia.
Most of the residents live onsite.
Mareae is one of the few who still lives at home with her whanau.
WOMAN: Haere mai. Haere mai.
MAN SINGS: # Haere mai. # (LAUGHTER)
Kia ora. Kia ora. Ko tenei toku mama.
Aue! Yeah. (LAUGHS)
Seadrome had developed a Maori kaupapa programme which uses tikanga, te reo and te ao Maori
to exercise the brain.
There's a turu over there.
Hei mua koe i a matou, e ihowa i a matou mahi katoa.
Kua pakakahia matou whai kororia ai koe i a matou mahi katoa.
He mea timata, mahi, whakaotiria to ingoa.
Taku ingoa ko Maria Morunga.
Whanau na... na Hokianga.
This is the— This is what I got to say. Kapai.
Kapai. Kia ora.
(ALL SING 'WHAKAARIA MAI')
# Whakaaria mai.
# Tou ripeka
# ki au. #
TUI: There is Maori clients there, and that's someone that Mum can relate to for being Maori,
cos Mum has also done other day programmes, but, yeah, she didn't really like them.
But there weren't Maoris there.
Um, i te taha o toku mama, no Rahiri me Pipiwai ahau.
I te taha o toku papa, no Ngati Kahungunu me, uh, Maniapoto.
Seadrome couldn't provide this programme without te reo speakers like Tiakina
to reconnect kuia and kaumatua to their culture.
MAN: Ah, tihei maura ora.
So what happened is that when the people of the Nga Toki Matawhaorua waka and the Mamari waka
came through the harbour, what they did was settle on separate sides.
The lesson that they had today, we've been going through on the map where they all came from,
and they all marked it all themselves last week.
And then we kinda started from the top, and we're gonna make our way down
so then they all, kinda, know a little bit of history about where they come from.
So this place here, Oha, that's the Hokianga. Mm.
And the people of the Mamari waka actually travelled around, and they settled around this area.
I think, at the end of the day, I just like being with my people.
I love it. Yeah. And they teach me a lot about the history that they know as well.
Mareae grew up speaking te reo. Tui didn't.
One benefit of the programme is Tui connecting with her mum's past.
(ALL SING 'HE PURU TAITAMA')
# He puru taitama. He puru tukituki.
# He puru taitama e. Haere!
# Ka haere taua e.
# Ki runga Otaki hoki. #
Socialisation has been shown, uh, to be a protective factor in the fight against dementia.
The reason being — people who are being social are stimulating their brain,
activating neurons in the brain, and so, uh, the more you activate the brain and use the brain,
uh, the better it's going to function. So, in some ways, the brain is like a muscle in that
the more you use it, the better it's going to function.
Haputa. (ALL EXHALE)
Hakina. (ALL INHALE)
TUI: They also say people that have dementia do go back to their native tongue.
She was korero Maori, and we were never brought up speaking Maori.
But, actually, she, um— she sorta went back to her childhood.
And cos that's what they had said —
that, um,... because of Mum's stroke and where it happened within the brain,
her— her, um...
Her childhood memory was very, um— she could remember her childhood,
but she couldn't remember, um, today.
I learned that it's better for them to have someone who knows their culture and where they come from,
cos they kinda go back to what they learned first, mostly Maori.
My auntie, she had dementia. She passed away a few years ago, but, yeah,
I didn't really quite understand it until I came here.
Yeah, so, back then, when she had dementia, I was just kinda like,
'Oh, Auntie, you're acting a bit different.'
But, yeah, now I understand it more, and I wish I had this knowledge when she was still alive
so I could have helped her go through it. Yeah.
A number of people reported that they didn't want their— their loved one to go into a nursing home.
And, actually, I know this from my own experience. My mum was unwell. She didn't have dementia,
but she was bedridden for the last two years, and putting her in a home, the shame of that
would have been worse than the actual disease that killed her in the end,
so we kept her at home, because there is that—
There is that Maori way of keeping our ill...
our elderly at home, irrespective of how well or unwell they are,
and taking care of them till the bitter end, sort of thing.
# Tuhituhi taku reta
# Ka ringaringa atu ahau.
# Ka mate ae ra
# te aroha e.
# E hine e
# Hoki mai ra
# Ka mate ahau
# i te aroha e. #
Amene. ALL: Amene.
We have excluded any Maori world view from our discipline.
And I think that probably is the situation of the case across the board,
irrespective of what area of health we're looking at.
Maori come into a Pakeha world to get medical help.
But the Pakeha clinicians or the Pakeha world or the Pakeha services
very rarely go into the Maori world to actually see what is needed.
Tena koe, Whaea. Ah, tena koe.
Haere mai. (CLEARS THROAT)
E noho — over here.
(SIGHS)
Ah. Pehea ana koe? Oh, ka nui te.
Ka nui te ora. Ah, pai. Me koe?
Ae, pai ana. Ae.
There's little things that clinicians can do like saying kia ora,
like pronouncing our names properly.
Minor things like that can make a huge difference and really engage the person —
the patient and the whanau.
So, Whaea, today we are going to— I'm going to be asking you to do some tasks.
So we're going to start with one task here, and what I want you to do is...
using these blocks, I want you to form that picture, that design on top with these two blocks.
All right? OK.
Today, Margaret is putting Whaea Mereana through standard exercises used for diagnosis of dementia.
These tests will be redesigned with a Te Ao Maori view.
Is that the same as that one there? Ae. Ka— Kapai.
All right. Here we go for the next one. Are you ready? Mm.
Go.
The assessment that we used on our whaea this morning is a tool that is commonly used
with our people in this country, whether it be in the health sector, the justice sector
or the education sector.
So the implications of the outcomes of these measures are widespread and significant for Maori.
Well done. Kapai.
The problem with those tools is that they have been developed overseas,
usually in the United States of America or the United Kingdom,
and they have been imported into New Zealand and imposed on Maori.
And on this task, I'm going to say a word to you. These are all Pakeha words, eh.
What I want you to do— What your job is is to tell me what that word means.
Glove. Ah...
For your hands — keep your hands warm.
For your hands or...? Or for washing...
keep— for sanitary reasons.
OK. Breakfast. What does breakfast mean?
Early morning kai. Ae. Kapai. A square...
What we want to do is create or develop a tool that, from the ground up, is based on te reo Maori,
it is based on matauranga. What the two will do that we are developing is it will portray
a more accurate and more valid profile of how that person is functioning,
how their mind is functioning, how their memory and their thinking abilities are functioning.
So, Whaea, how did you find that? Um, I thought I was quick...
with my eyes and my thinking. Mm-hm.
But if I was to grade myself personally between one and five, I would only say I'm two.
Really? Mm.
You might be underestimating your skills.
Let me have a look at the whole performance. I'll come back to you.
We can meet again and go through the report, and I'll explain the results to you.
When we provide you with strategies or techniques to manage and cope in your daily life,
we will highlight those strengths so that you can utilise those strengths to make, um—
to make your life that much easier.
So, kia ora, Whaea, for coming in and doing this mahi this morning.
E tenei ra.
It was a good exercise for me to use that part of my thought process.
And, um,...
And I found that I'm not as smart as I thought I was. (LAUGHS)
(UPBEAT MUSIC)
We're here at Manukau Marae in Te Tai Tokerau.
This is my marae. This is the marae of my tepuna.
The marae of my heart, of my home.
# Haere mai ra.
# Haere mai. #
Margaret has been following a group of kuia and kaumatua from her home marae for more than a year.
Today her and fellow experts are sharing some of their early findings with the group
and giving them tips on staying well.
We've come here to talk with the whanau about the rangahau that we are conducting —
Maori and mate wareware, or Maori and Dementia.
Na reira, ka mihi atu ki a koutou.
Nau mai, haere mai. Haere mai ki roto i tatou tupuna whare Te Whakamaharatanga.
I'm very passionate about it, cos I think it's going to make a difference for always, forever.
Our kuia, our kaumatua have always gone out of their way, put their efforts into helping our tamariki,
our rangatahi, our mokopuna, and now it's our turn, for us to do something back for them.
They make sure that we are doing a rigorous scientific research project
as well— and combining it with matauranga Maori.
We can marry the two worlds. There is a pathway forward where matauranga or te reo Maori
and western science can take our people forward.
The western tools that we were using for cognition assessment
and for thinking about the ways to evaluate the mind
were not appropriate and were not correct.
Some of them were saying, 'Well, I'm just sitting here, waiting for my dementia,'
because they didn't realise that not everybody gets dementia.
They thought that was a normal part of growing old. That's just a lack of information.
They want to know what they can do to help themselves. They want to be independent
and function in the community and keep functioning as a member of the whanau for as long as possible.
So, one of the things that Makareta and I have discovered is some movement and some brain stimulation
can be very good. It's a multi-sensory exercise method.
Back. OK, so it's pointing this way. It's the left-hand side of your body.
OK. So let's do the tune, which—
The effects of dementia can be reduced by controlling weight,
socialisation, eating well and exercise.
Tune. Good.
Clap. Space. Clap. (ALL CLAP)
Clap. Clap.
Clap. Clap. Clap!
Clap. Clap. Tune. Tune. Tune.
If I was to give advice to our kuia, kaumatua, to our whanau,
it would be to be involved, be engaged and be active in te ao Maori.
Be present at activities on the marae.
This actually sits really well with what Maori have been saying for many years —
is that a positive Maori identity equates with good health and well-being.
(ALL SING 'HAERE MAI')
# Not a cloud in the sky... # (LAUGHTER)
(HORN BEEPS)
See ya, Norma! Norma's still singing.
(LAUGHTER)
TUI: All right, Mum. Are you ready? Should we go have some breakfast? Yeah, OK.
Despite the added responsibility, Mareae's whanau are determined to keep their mother at home
for as long as possible.
There are really good support agencies out there for families.
You know, like, it's OK to ask for help. You've gotta have that attitude, cos it is hard.
I've had many cryful moments with my mother, but, actually, you know,
you've gotta look for that wellness for your mother.
Her care could become more full time, and, you know, financially, that's another pressure,
and who's gonna look after Mum?
You don't want to put Mum in a home because she, I suppose, belongs to us. (LAUGHS)
And, um, she's very part of the family.
I— I love this place, and, um,...
Well, there's something about it, you know? It's home.
I would say she'd go downhill because we're not there.
You know, Mum's 83. She's lived here 50 years.
My parents have invested on us and on their life.
This is where my mum belongs.
She belongs here with us, you know?
She teaches me to be strong as a woman.
She teaches me to love.
(SOBS) She teaches me to respect people.
And she teaches me to fight.
That's what my mum teaches me.
# You're really here at last. #
# Ha-ere mai.
# Not a cloud in the sky.
# To coin a phrase... #
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