Researchers who went door-to-door in two large New Zealand cities have been surprised at the sheer volume of dementia sufferers unaware they have the condition.
The IDEA project—Impact of Dementia and Equity in Aotearoa—has just completed its first year of the biggest ever study of dementia in the country.
That involved 50 interviewers from various cultural backgrounds knocking on more than 20,000 doors in Christchurch and Auckland, says lead researcher Professor Ngaire Kerse, a director of the University of Auckland’s Centre for CoCreated Ageing Research.
They spoke to around 600 people of European, Chinese, and Indian descent.
“Between a third and a half of people in each group had no idea they had memory problems, so they were not known to services,” Kerse said. “There’s a lot of stigma about dementia, so families might not want their loved ones to be 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 associated with loss of memory, mental confusion, language problems, spatial perception difficulties, and changes in mood and behaviour.
It affects people more as they age, and it’s been thought that roughly 5 percent of people aged over 65 live with the condition, but this increases to more than 30 percent in people aged over 85.
However, the results of this study suggest the actual proportions could be much higher, though it’s too early to say from such a relatively small sample size.
The study will compare information uncovered during the interviews with existing data from the National Health Index. This will help assess how many new people with dementia are found through the study.
Dementia usually progresses slowly, so early diagnosis can allow people to prepare for the future and organise their affairs through instruments such as enduring powers of attorney and a will before they lose the capacity to do so, which greatly complicates things for family members if they’re not in place when a doctor certifies a person is incapable of managing their affairs.
The project has been able to help several older people and caregivers who were experiencing distress in the face of dementia by referring them to agencies providing additional support.
“Once there’s a diagnosis, we can do a lot to improve people’s quality of life and demystify what is happening to a loved one,” says Kerse, who also works as a general practitioner.
“We’re trying to establish the prevalence of dementia in Chinese, Indian, and European populations because this is not currently known in New Zealand, as strange as that may seem,” she says. Parallel projects are looking into dementia in Māori and Pacific populations.
The project was launched in April 2024 with a $4.9 million grant from the Health Research Council. It will continue with 30 interviewers carrying out 700 more four-minute interviews with people aged 65 and over. That will bring the total to 1,300.
An equity analysis will then be carried out to understand barriers to care and the best ways to help affected people flourish.
Later in the five-year project, the researchers will interview caregivers to find out more about the challenges they face and to gather information on successful ways of helping people with dementia.
“We want to [help] create improved support for people who are caring for older people with dementia, because they can get quite stressed,” Kerse explains. “This might be a new service or new ways of delivering support to meet the needs of specific ethnic groups.
In New Zealand, an estimated 70,000 people currently live with dementia.
This number is projected to increase to nearly 170,000 by 2050. According to the Dementia Economic Impact Report, published in 2020, the current annual cost of the condition is estimated at $2.5 billion, with projections reaching $5.9 billion in another 25 years.
