Imagine if you could be told 20 years in advance you were going to get dementia and then begin treatment to prevent it.
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One long-term study is hoping to bring that closer to reality, as a dementia advocate stresses the urgent need for more research into the disease, forecast to affect 170,000 New Zealanders by 2050.
Dr Brigid Ryan of the Centre for Brain Research at the University of Auckland said the best time to treat dementia is, ideally, before symptoms appear.
She heads the New Zealand Genetic Frontotemporal Dementia Study, which aims to identify the signs the body gives off in the earliest stages of the disease that might act as red flags, signalling a person will later develop dementia.
"These disease processes are happening for a very long time before they reach a tipping point that actually causes symptoms," Ryan said.
"So there's a real window of opportunity where we can potentially intervene to prevent these symptoms from developing, and that's what our studies focused on, identifying that really early stage where prevention and intervention is possible."
The unique long-term study began with one woman who knew the disease ran in her family and donated her brain to the Centre for Brain Research.
Frontotemporal Dementia is less common than Alzheimer's but no less devastating: changes in someone's personality, behaviour or language ability are early warning signs and these can be triggered well before the age of 65.
And it can run in families, as it does with the Auckland whānau who put themselves forward to be part of the study.
Ryan said the dementia creeps in over time.
"There are particular proteins that are becoming dysfunctional and they're basically building up inside of the brain and in particular regions of the brain that are involved in particular functions.
"Over time, this build-up reaches a tipping point where those symptoms then become apparent.
"But, for a very long time before then, we can see these changes starting to happen."
Ryan hopes what her team discovers in the research can be applied more broadly across the general population and ultimately, people can be screened and treated for the disease before it affects their lives.
She said researching the early changes are the first step - the second is the medications that will treat the disease, and that research is underway.
Right now, about 70,000 New Zealanders have dementia, but our population is ageing and that number's expected to mushroom to 170,000 within the next 30 years.
Health experts have warned that will put an unbearable amount of pressure on our health system, costing nearly $6 billion a year.
Alzheimer's New Zealand chief executive Catherine Hall said more research on the disease is vital.
"The amount of money spent on research about dementia in New Zealand is woefully inadequate," she said.
"And that's a real problem because there are a lot of people affected by dementia - a lot of people will develop dementia here in New Zealand and a lot of families are affected by it.
"That's only going to get worse as our population ages."
Advocates have been urging for more government support for the sector, as the pandemic further stretches scarce resources.
President of the New Zealand Council of Christian Social Services and chief executive of HBH Senior Living in Auckland, Bonnie Robinson, said many older people needing care have varying degrees of cognitive decline, including dementia.
She said more money is needed to support carers, but ensuring older people are not feeling lonely, restless or bored, is still essential.
"To have a life you need to have meaning and purpose and companionship and a sense that people know who you are.
"So getting our attitude around, 'What are we there to do?'
"We're there to help people have a really good life, and then we need the resources to be able to do that."
Robinson said community providers are increasingly helping to care for people with dementia - but they need support too.