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A $1 million Neurological Foundation grant to establish a national MateWareware – Dementia Prevention Research Platform is helping New Zealand researchers solve some of the biggest unanswered questions in dementia research. Mate wareware is a te reoMāori term for dementia and reflects one of the three main objectives of the platform: to address equity in dementia research and access to new treatments for Māori. The platformwill also establish New Zealand’s first national dementia registry. The overarching focus of the platform, though, is to extend and expand the work of one of Aotearoa’s most important studies of dementia to date – the New Zealand Dementia Prevention Research Clinics (NZ-DPRCs). The clinics are the most comprehensive longitudinal study of dementia ever in New Zealand, involving nearly 500 people. Leading the platform is Professor Lynette Tippett, from the University of Auckland’s Centre for Brain Research, who has spent more than a decade building the research clinics, located across New Zealand. “This is a milestone for dementia research in Aotearoa,” Lynette says. “Over the past ten years, as more and more participants have joined the study, we have built an incredibly rich pool of information. We are now reaching a point where it can help us answer some really important questions.” As well as continuing the vital work of the clinics, the platformwill help to promote access to the valuable data to researchers across New Zealand, while maintaining data security. Within reach: progress looming The investment comes at a critical time, Lynette says, with the field rapidly advancing. Blood tests capable of detecting amyloid, one of the proteins that forms in the brains of people with Alzheimer’s disease, are on the horizon. This can be detected before dementia develops. The first drug treatments to slow the progression of the disease have begun to emerge. “When we started the clinics, you could only be definitively diagnosed with Alzheimer’s post-mortem by examining brain tissue,” Lynette explains. “Things have changed in the field. We can nowmeasure amyloid and tau (another abnormal protein) in living people using PET scans, and we knowmuch more about what blood can tell us about the disease. But we still have a lot to learn about what those markers, present in people before symptoms develop, actually tell us over time.” The nationwide DPRC study operates in Auckland, Christchurch and Dunedin. Over the past decade it has progressively recruited nearly 500 New Zealanders. When they join the study, participants complete brain scans, blood tests, cognitive assessments and health questionnaires, and this is repeated every two years, contributing to one of New Zealand’s richest datasets. “We’re following people with normal cognition, people who are beginning to notice changes in their memory, people with mild cognitive impairment, and some who have progressed to dementia,” Lynette explains. The differences between those groups are not always as clear-cut as people might imagine. Forgetting why you walked into a room, or struggling to recall a name, does not mean you have dementia. “As people get older, they may not remember things as crisply as they used to. A lot of that is normal ageing,” Lynette says. What matters is the magnitude of the change, and whether a person is still able to manage everyday life. “People with mild cognitive impairment may have measurable changes in their memory or other areas of thinking, but are generally still functioning normally day-to-day, often using strategies to compensate. “A diagnosis of dementia is only made when cognitive changes begin to significantly affect everyday life. Maybe they’re not able to manage their finances anymore. Or someone who has cooked for the family all their life is no longer able to cope with the sequencing of a recipe, or is often leaving elements on.” Following people over time is a vital part of the research. A one-off assessment can show how someone is functioning at a single point in time, but not whether they are changing, how quickly, or why. “At a cross-sectional point you can see lots of things, but you can’t identify what is actually important in terms of a person’s risk of progressing. That’s why the longitudinal aspect of the data is so crucial.” Beyond the data Lynette emphasises that the value of the study extends far beyond data and tracking. As well as collecting information, the clinics are places where participants receive support, information and understanding. “I’d like to think what differentiates our study from a lot of the bigger international studies is the amount of care we give to our participants,” Lynette says. “Returning every two years for extensive assessments is a significant commitment. Brain scans alone can take around 45 minutes and for some people can be quite challenging. “We’ve tried to make it more reciprocal, to build relationships and give back where we can, because participants are giving us an awful lot.” Those bi-annual scans are helping to answer one of the platform’s biggest questions: why some people with amyloid plaques in their brains remain cognitively healthy for years, while others decline more rapidly. Around six years ago, the clinics began collecting PET scans, which can detect amyloid in the brain. It is one of the more important advances made since the study began. This technology is not routinely found in the health system but can be accessed via the clinics. “Having the infrastructure already in place for researchers to probe new questions is extremely valuable,” says Lynette. “Cause for optimism”: transforming dementia care for all New Zealanders Why do some people develop dementia while others don’t? Why do people with dementia decline at different rates? And what puts some people at greater risk? “This is a milestone for dementia research in Aotearoa.” Professor Lynette Tippett Professor Lynette Tippett leads the MateWareware – Dementia Prevention Research Platform. 6 Headlines 7 Headlines