Startling Numbers In New Zealand's Biggest-Ever Study On Dementia

Monday, 14 April 2025, 2:41 pm
Article: RNZ

Amanda Gillies, for The Detail

Researchers knocked on doors to gather data on dementia. They found that somewhere between half and a third of interviewees didn't know they had memory problems.

A major new New Zealand study, billed as a world-leading programme, has revealed thousands of Kiwis are living with dementia but are undiagnosed and not getting appropriate support.

The IDEA project - Impact of Dementia mate wareware and Equity in Aotearoa - has just completed its first year of the biggest ever study of dementia in New Zealand.

Fifty interviewers, armed with an established dementia diagnostic tool, knocked on more than 20,000 doors in both Christchurch and Auckland, with more than 600 Chinese, Indian and European people aged 65 and over agreeing to be interviewed.

Lead researcher Professor Ngaire Kerse - a director of the University of Auckland's Centre for CoCreated Ageing Research and the Joyce Cook chair in Ageing Well - tells The Detail "between a third and a half of people in each group had no idea they had memory problems".

"It could be about 30,000 people, 40,000 people [with the disease] - that would increase as time goes by, it's quite a few people," she says.

"Some of those who scored in the area indicating dementia actually weren't receiving any services and some of them were unaware this was a problem.

"This is why we are doing this study - to find out what the proportion is - so we can plan better for the future.

"Of course, as our population ages, we want people with dementia to be flourishing, living well, we want services to be available, we want society to accept and encourage these people to participate as much as possible, so we need a good, accurate look at those numbers."

Part of the problem, she says, is the stigma surrounding dementia.

"Families are reluctant to have their loved ones exposed to that.

"Once people get past the stigma, getting a diagnosis can be extremely helpful, because it opens access to social support, home help, personal care and support groups."

Dementia is not actually one specific disease, but an umbrella term that is used to describe about 100 different illnesses that affect a person's ability to think, reason and remember.

There is no cure, and it is a progressive condition that steadily worsens over time.

It can have a profound impact on a person's daily life, as well as the lives of their family members. Aucklander Leah Antunovich knows that only too well. She was diagnosed in 2018.

"I'm an ex-nurse so I suspected I had it for 18 months before I was diagnosed - I was getting lost, I would step outside the door and wouldn't know where I was, it was pretty scary," she tells The Detail.

"The toughest part is once people know you have dementia, they will treat you like you are demented, and they will start treating you like a victim - I'm so not a victim.

"There is absolutely a stigma around dementia. Personally, I feel sorrier for the caregivers of those with dementia - it's really hard work, some people get aggressive or aren't aware of anything much, that's really, really hard for the loved ones and caregivers.

"For myself, I'm not there yet... I'm in pretty good shape, I put that down to doing quizzes and doing physical fitness."

The IDEA project was launched a year ago with a $4.9 million grant from the Health Research Council.

Parallel projects are looking into dementia in Māori and Pacific populations in New Zealand.

The research will soon launch on the North Shore, where 30 interviewers will go door-to-door, aiming to get to another 20 thousand homes and completing another 700 interviews.

This information will be compared with existing data within the National Health Index.

An equity analysis will be done, to understand barriers to care and the best ways to help people with dementia flourish.

Later in the five-year project, caregivers will be interviewed by the researchers to find out more about their challenges and their tips for managing dementia.

Check out how to listen to and follow The Detail here.

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