Families missing early dementia signs as projections soar

With New Zealand marking World Alzheimer's Day on Sunday, health experts are warning that the stigma surrounding dementia is keeping many families from seeking help.

An estimated 83,000 New Zealanders are currently living with dementia, according to the latest figures from Alzheimers New Zealand, although experts believe the actual number is higher.

At the same time, rapid population ageing among Māori, Pacific and Asian communities is expected to accelerate the rise in dementia cases nationwide.

Catherine Hall, chief executive of Alzheimers New Zealand, said the estimate was based on international dementia rates applied to the country's population.

She said the true figure was likely higher, since several risk factors - including cardiovascular disease and sensory impairments such as hearing and vision loss - were more prevalent in New Zealand than global averages suggested.

"We have quite high rates of cardiovascular disease in New Zealand, particularly among Māori, Pacific and Asian communities," she said. "It may well be that the real number is higher, but we don't know the answer to that just yet."

The IDEA (Impact of Dementia and Equity in Aotearoa) project, a five-year study of dementia in New Zealand, has completed its first year of research.

The study aims to determine how many people are living with dementia - mate wareware in te reo Māori - across different ethnic groups and what support communities need to care for ageing relatives.

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, co-director of the University of Auckland's Centre for CoCreated Ageing Research and the Joyce Cook chair in Ageing Well, said between a third and a half of people in each group had no idea they had memory problems.

She said a widespread belief that dementia was simply a normal part of ageing had led to underdiagnosis.

"Dementia is not part of the normal ageing process, it is a combination of different diseases," Kerse said. "Alzheimer's and strokes are the most common causes, followed by less common types such as Lewy body dementia."

She said stigma within families, communities and society in general, along with a shortage of culturally and linguistically appropriate services for groups such as Indian and Chinese communities, had also discouraged people from seeking help.

Felix Lin, ethnic communities and strategic planning manager at Age Concern Auckland, agreed.

He said multiple barriers such as language and communication difficulties, cultural differences in understanding dementia and the complexity of navigating New Zealand's health system had delayed diagnosis and prevented families in ethnic communities from accessing timely help.

The organization planned to host a dementia symposium for the Chinese community this month, part of a strategy to help Chinese families feel supported and better equipped to respond to dementia, Lin said.

"Some Chinese carers ask us if they are doing the right thing at home and worry about being misunderstood as mistreating their loved ones," he said.

"Our visiting service coordinators also report cases where older people show early symptoms of dementia, but families are not aware these are signs of the condition," he said.

"That is why raising awareness and providing culturally appropriate resources through collaborative efforts is so important," he said.

"When families feel confident and supported, it reduces stigma, strengthens resilience and, ultimately, leads to better outcomes for older people."

According to Stats NZ's 2023 Census, 34,308 Chinese and 18,720 Indian residents are aged 65 and older.

The Asian population in this age group is projected to grow from 72,900 in 2023 to 299,800 by 2048 - a fourfold increase.

This cohort is forecast to include 120,700 Chinese and 80,500 Indian individuals.

Hall said the country's rapidly aging population was expected to drive a sharp increase in dementia prevalence.

The Dementia Economic Impact Report 2020 projects that the number of people living with dementia nationwide will more than double by 2050, reaching 167,483 - 2.7 percent of the total population and 10.8 percent of those aged 65 and older.

Māori, Pacific and Asian populations are expected to account for a growing share of future cases.

Between 2020 and 2040, the increase in dementia among these groups is projected to be twice the rate seen among Europeans.

The number of Europeans living with dementia is projected to nearly double, from 60,500 in 2020 to 106,500 in 2050.

Among Māori, Pacific and Asian populations, the numbers are expected to nearly triple over the same period - from 4,300 to 12,030 for Māori, from 1,930 to 5,450 for Pacific peoples and from 4,800 to 17,990 for Asians.

Warning signs of dementia

As those numbers rose, experts said it was crucial to understand what dementia was and what it was not.

Many conditions, including stroke, depression and infections, as well as normal ageing can cause dementia-like symptoms.

Hall said dementia was an umbrella term for a range of conditions that affected how the brain works.

These illnesses undermined memory, judgment and communication, and gradually eroded a person's ability to care for themselves and stay safe, she said.

"We all lose our keys sometimes or forget names," she said. "That's normal and it happens to us more often as we get older.

"But memory loss affects the way that we're able to live," she said. "We forget recent events - that is a sign to take notice of."

Alzheimers New Zealand advised families to keep an eye out for some specific warning signs:

• Memory loss that disrupts daily life
• Difficulty carrying out familiar tasks
• Trouble starting or following a conversation
• Disorientation about time or place
• Poor judgment
• Neglect of personal appearance
• Having problems with abstract thinking
• Misplacing items
• Changes in mood, behavior, personality or motivation, including the loss of interest in activities once enjoyed

Hall said it was important to see a general practitioner or primary health care provider if people were concerned that they or someone they know might have dementia.

She said it was important to maintain a healthy diet, exercise regularly and stay socially connected with friends and family to help keep the brain active and lower the risk of developing the disease.

Kerse highlighted the importance of early diagnosis, which allowed people to prepare for the future and put legal measures such as an enduring power of attorney in place before they lost capacity.

"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," she said.