Dementia research with culture at its core
A first-of-its-kind partnership to improve outcomes for whānau living with dementia has been launched in the Far North.
Te Hau Ora o Ngāpuhi (THOON) and the University of Auckland’s Centre for Brain Research (CBR) have joined forces to create Te Rōpū Aumangea, a kaupapa Māori programme to support kaiawhina (caregivers) and whānau caring for people with the disease.
The initiative, which kicked off in Kaitāia on February 16 followed by a pōwhiri in Ahipara on Tuesday, follows a world-first study on dementia launched late last year by CBR deputy director Māori, Dr Makarena Dudley (Te Aupōuri, Ngāti Kahu, Ngai Tākoto).
The nationwide study will determine the prevalence of dementia among Māori, with the new THOON and CBR partnership to complement the research being carried out in that space.
While there is still limited research into dementia in Aotearoa New Zealand, the available data shows Māori are being diagnosed with the condition almost 10 years earlier than non-Māori.
“This programme provides information and education, but is mainly a safe place for caregivers to talk about their experiences,” Dudley said.
“My hope is that this will be one of many steps along the way in the Centre for Brain Research’s vision to work towards improving brain health for Māori.”
Te Rōpū Aumangea offers fortnightly meet-ups for up to 10 people and acts as a form of support group for caregivers.
Many of the staff working in the programme have lived experience of caring for a loved one with dementia and therefore understand the challenges first-hand.
Rina Schmid, the Te Rōpū Aumangea team lead, said she felt determined to help others after experiencing her own mother’s struggle with the disease.
“Typically, for most families dealing with mate wareware [dementia], they are so overwhelmed, they don’t know who to talk to or where to go.
“The stress is unimaginable, so I knew that when that chapter was
over for me, I wanted to help others beginning that same journey.”
THOON chief executive Tia Ashby said the partnership between CBR and THOON was not merely a collaboration but represented a beacon of hope in efforts to address the many challenges faced by Māori.
She said she also wanted to acknowledge Te Aka Whai Ora (Māori Health Authority), which had been instrumental in supporting the kaupapa (cause/programme).
“Within the Māori population, the prevalence of mate wareware [dementia] is disproportionately high,” Ashby said.
“The cultural nuances surrounding caregiving also add additional layers of complexity.
“Recognising these challenges, our partnership serves as a testament to our commitment to resilience and innovation in the face of adversity.”
Among the distinguished guests at Tuesday’s pōwhiri was Sir Richard Faull (Ngāti Rāhiri, Te tiawa), the country’s pre-eminent brain researcher.
Faull is a Professor of Anatomy, is the CBR director and has been recognised for addressing the cultural sensitivities between Māori traditions and neurological research.
In the late 1980s, Faull discovered the gap in Māori participation in brain science was due to tīkanga Māori — the ethical understanding that the head, including the brain, was tapu (sacred) and not to be tampered with.
He said building on this knowledge of tikanga Māori in brain research was imperative and the relationship with THOON a great milestone for all.
“Bringing our brain experts out here to work with your kaitiaki [guardians] looking after kaumātua with mate wareware, that has never happened before,” Faull said.
“As far as I’m aware, this is also the first time in the history of the university to form a partnership on the marae.”
Te Rōpū Aumangea is currently running its pilot programme in Kaitāia.
In addition to Te Rōpū Aumangea, THOON also runs Manawatia Pākeke, a combined support group for both carers and adults with dementia (founded by Frank and Judy Solomon) and endorsed by Alzheimers Northland.
A third programme, Haumanu Whakaohooho Whakaao, will start in April and is a specialised evidencebased therapy (taught through a Māori lens) created by Dudley for people with mild-moderate mate wareware.
All three programmes currently run in Kaitaia and Kaikohe, with the view to rolling them out across the rest of Te Tai Tokerau, particularly in smaller rural areas.
● For more information, email THOON on: referrals@THOON.org.
nz or call: (09) 405 2647.