A landmark research project is working to build a clearer picture of dementia | mate wareware in Aotearoa – and it’s doing so by listening closely to those who are often underrepresented in the data.

The IDEA Programme (Impact of Dementia mate wareware and solutions for Equity in Aotearoa), led by Dr Ngaire Kerse and a cross-disciplinary team of researchers, has spent the past year engaging directly with older New Zealanders in Auckland and Christchurch. The goal: to better understand the true prevalence of dementia | mate wareware across different ethnicities, and to design solutions that reflect the experiences of our diverse communities.

“This is the first time we’re able to get a clearer picture of how dementia mate wareware affects different communities across Aotearoa,” says Dr Ngaire Kerse, research lead for the IDEA Programme. “By working in partnership with communities and organisations like Dementia New Zealand, we’re ensuring that the findings are grounded in real-world experiences – and that they can lead to practical change.”

Researchers have been knocking on doors in randomly selected urban and rural mesh blocks (defined as small geographic areas defined by Stats NZ for census purposes), inviting people aged 65 and over to participate in a screening interview.

Multilingual interviewers, supported by a local research team, have helped to ensure that people feel comfortable taking part – with early results showing that kanohi-ki-te-kanohi (face-to-face) contact and cultural understanding are essential to encouraging participation.

More than 3,000 people have already been screened, and hundreds of full assessments have been completed with people from NZ European, Indian, and Chinese backgrounds. The regions selected for the study – Tāmaki Makaurau Auckland and Ōtautahi Christchurch – reflect areas where Dementia New Zealand Affiliates provide support every day through community-based services.

Alongside the IDEA Programme, complementary studies are being led by Māori and Pacific researchers to explore the experiences and prevalence of dementia mate wareware within their own communities. These kaupapa Māori and Pacific-led approaches ensure that the research is culturally grounded and responsive, with findings that will contribute to a fuller national picture.

While the full findings won’t be released until next year, early themes are already emerging. These include higher numbers of people showing cognitive change in some communities, differing understandings of cognitive change, and a wide variety of care arrangements shaped by culture and circumstance.

“This study is going to be really important in helping all of us think about how we support people living with dementia | mate wareware – and how we plan services into the future,” says Cathy Cooney, Chief Executive of Dementia New Zealand. “Understanding what’s working for people, and where the gaps are, is essential to making sure our services are fair and equitable for everyone.”

As this work continues, the IDEA Programme is helping build a deeper understanding of how dementia | mate wareware is experienced in communities across Aotearoa – door by door, story by story – helping shape a future where no one is left out of the picture.