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“University-based research can create barriers for Māori,” says Makarena. Unfamiliarity with a university setting, a shortage of Māori researchers, and a perception that the research is not ‘about them’ can all discourage participation. “Research works best when people can see themselves reflected in it,” says Makarena. “That means not simply inviting Māori into an existing research model, or simply shifting a university clinic onto a marae, but working alongside Māori to shape how the research is designed and delivered.” Like the existing clinics, Māori-informed research works best when participants are more than research volunteers. They are welcomed into a community where they receive information, support and understanding. Makarena will work with the National Hauora Coalition, a Māori-led health organisation, to hold a series of hui and wānanga to help connect the research with Māori communities. The objective is to co-design a model for the clinics with Māori that brings together mātauranga Māori with western science. For instance, informing blood collection protocols so it is undertaken in ways that are culturally safe and aligned with tikanga Māori. Improving Māori participation is about more than increasing numbers, Makarena adds. Māori face a significantly higher risk of mate wareware than Pākehā. According to a 2024 study by the Public Health Communication Centre Aotearoa, the number of people with dementia in Aotearoa is expected to double in the next 20 years. However, it will almost triple in the same period for Māori and Pacific peoples. The report says Māori overall have higher rates of modifiable risk factors such as diabetes, high blood pressure and smoking. “We need to better understand the risk factors of mate wareware for Māori so future prevention strategies and treatments are informed by evidence that reflects all New Zealanders,” Makarena says. Examining the bigger picture A final aim of the platform is to zoom out from the clinics to give a fuller picture of who is developing dementia, how people are diagnosed, and what is happening to them over time. Led by Associate Professor Gary Cheung, a psychiatrist and dementia researcher at the University of Auckland, the project will establish Aotearoa’s first National Dementia Registry. The project will begin by creating a national memory clinic network and consistency in the information being collected. Unlike the DPRCs, which collect information from people who have chosen to take part in research, a registry would collate information fromNew Zealanders accessing memory clinics across New Zealand. “There are some fundamental questions that we are still not able to answer,” Gary explains. “For instance, we don’t have a complete, up-to-date picture of howmany people are diagnosed with dementia across the eight memory clinics in New Zealand, and how this is changing over time.” The registry will focus on improving the quality of care in memory clinics and eventually, building a national pool of information that researchers can use to track patterns in dementia and glean other useful information. For instance, as new blood biomarkers move into clinical practice, a national network could help researchers tailor services to different populations. Impacting people’s quality of life Lynette is clear on the focus of this research: the humans at the centre of it. “The more accurate we can become at identifying the future trajectory for people, then the better it is for that person and the clinician,” she says. “Being informed enables people to make decisions about how they’re going to live their life, what they’re going to do in the next few years, and all of those things that make an actual difference to quality of life.” Lynette with NZ Governor-General and Neurological Foundation patron RTHon Dame Cindy Kiro at the Programme and PlatformGrants launch event. Detecting brain disease via the eyes: a Q & A with Dr Benson Chen Why are researchers so interested in the eye as a window into the brain? Eyes can potentially tell us a lot about what is going on in the brain, but they have been overlooked for their potential to diagnose and predict neurological disease. The cells at the back of the eye connect through the optic nerve to the brain. So if you have a disease process that causes progressive neurodegeneration, such as Alzheimer’s, nerve fibres within the optic nerve and retina can also be affected and we may be able to detect those changes at the back of the eye. One of the advantages is that the eyes are accessible and, for most people, there are two of them. Unlike the brain, the eye is readily accessible and we can directly examine it. There are many markers in the eye that correlate with neurological disease. We can measure things like eye movements, pupil function, retinal nerve fibre thickness, the health of blood vessels, and how quickly electrical signals travel from the eye to the brain. Together, these measurements provide valuable insights into the structure and function of the nervous system. A simple photograph of the back of the eye can reveal important information about the retina and retinal blood vessels, offering clues about systemic health including the effects of high blood pressure and diabetes, which are also risk factors for stroke and heart disease. We also see changes in conditions such as multiple sclerosis, where inflammation and injury to the optic nerve can result in thinning of the retinal nerve fibre layer that can be detected using special imaging. For neurologists, these measurements can help distinguish between different neurological diseases, monitor disease progression, and, in some cases, support an earlier diagnosis. One of the largest studies in the UK analysed retinal images from tens of thousands of participants to investigate links between changes in the eye and cognitive decline. The findings suggested that thinning of the retina may be associated with an increased risk of cognitive decline and could help predict the progression of dementia. But there hasn’t been enough research yet to work out how to turn those findings into tools that can be used for individual patients. My hope is one day you could pop into an optometrist and have a photograph taken and use it to estimate your individual risk of dementia. With the power of AI and time, I think that will happen. Neurologist Dr Benson Chen says the eyes are not only a window to the soul, they are also a window to the brain. Trained as a neuro-ophthalmologist, Benson’s sub-specialty sits at the intersection of the eyes and the brain, and he treats patients with eye-related neurological conditions at a monthly clinic in Auckland. His work as a general neurologist at Auckland Hospital’s Neurology Department brings him into contact with a much wider range of conditions. Around one in eight cases he sees is related to memory or cognition. As well as being a clinician, Benson is also a researcher. He has received two fellowships from the Neurological Foundation. In 2018, he received a VJ Chapman Fellowship to study at Emory University in the United States, where he researched ways to improve the diagnosis of conditions affecting the optic nerve using advanced eye imaging and MRI. He is currently part-way through a Senior Clinical Research Fellowship to study optic neuritis, a condition where the immune system attacks the optic nerve. It is associated with autoimmune neurological conditions such as multiple sclerosis. We spoke to Benson about what the eyes can tell us about the brain. 10 Headlines 11 Headlines