Healthcare, New Zealand (Commonwealth Union) – A groundbreaking study on dementia in New Zealand is underway, challenging the notion that we have a comprehensive understanding of its prevalence among New Zealanders and their diverse cultural backgrounds.
Launching in early April, this unprecedented research effort involves over 50 dedicated researchers visiting thousands of homes in targeted regions of Auckland and Christchurch. Their mission: to engage with 2100 elderly individuals and their families in their native languages. By doing so, they aim to ascertain the prevalence of dementia across four key ethnic groups—Pākehā, Chinese, Indian, and Fijian Indian.
Research into dementia has been a key focus for researchers across the world from the applications of AI to online tools to evaluate dementia risk.
The significance of this endeavor lies in its potential to illuminate discrepancies between the actual prevalence of dementia and existing health data. Moreover, it seeks to identify the unique support needs of various communities in caring for their elderly relatives. Concurrently, similar investigations are underway within Māori and Pacific communities.
This ambitious $5 million initiative, known as the IDEA study (Impact of Dementia mate wareware and Equity in Aotearoa), is generously funded by the Health Research Council. Spearheading this effort is Professor Ngaire Kerse, an esteemed expert in healthy ageing at the University of Auckland. Kerse holds the Joyce Cook Chair in Ageing Well, a position established in 2018 through the philanthropy of Metlifecare founder Cliff Cook in honor of his late mother, renowned aged care advocate Joyce Cook.
Kerse highlights New Zealand’s lag behind many parts of the world in understanding the prevalence and consequences of dementia within our increasingly diverse and aging population. This information holds significant importance for medical professionals, the healthcare sector, and government policymakers.
She also pointed out that without a clear understanding of the number of individuals affected by dementia and its impact on both them and their families, it becomes challenging to tailor appropriate services. Furthermore, developing culturally sensitive services necessitates knowledge of dementia prevalence across different ethnic groups.
Associate Professor Sarah Cullum, a leading old age psychiatrist, suggests that it is possible that approximately 70,000 New Zealanders currently live with dementia, a number expected to triple by 2050. This estimate aligns with global projections, indicating that the worldwide dementia population may surge from 50 million to 150 million by 2050.
The economic burden of dementia care in New Zealand was $2.5 billion in 2020, according to the Dementia Economic Impact Report released in 2021 by researchers in the IDEA dementia study. Projections indicate that these costs will more than double to $5.9 billion by 2050.
Kerse points out that international data indicates that up to 60 percent of individuals with dementia may go undiagnosed. This issue is especially pronounced within New Zealand’s Chinese communities, where the elderly population is expanding at a rate surpassing the average. In 2013, less than 10 percent of the Chinese population was aged over 65; however, projections suggest this figure could reach 17 percent by 2038. Similarly, among the Indian community, the proportion was 5 percent in 2013 and is anticipated to potentially rise to 12 percent by 2038.
“Asian elders are rarely referred to local memory services,” said Kerse. “Asian families often find health and social care services in New Zealand difficult to negotiate because of language problems, and the fact there is no culturally and linguistically appropriate service available for their elders. There is also stigma associated with accessing dementia services.
”The Ministry of Health acknowledges the importance of culturally appropriate dementia support and services for Māori, Asian and Pacific families and prioritises equity, Kerse added. “But we know very little about our diverse populations nor how best to deliver culturally appropriate care.”
Professor Rita Krishnamurthi heads the research team responsible for the Indian and Fijian Indian segments of the study. Drawing from personal experience, she intimately understands the shortcomings of the Pākehā-centric healthcare system. Reflecting on her father’s struggle with dementia, she recounts, how initially, there was a glaring absence of discussion surrounding his diagnosis and prognosis. Instead, doctors abruptly recommended placement in a care facility. It was up to our family to advocate fiercely for his rights, compelling us to build a compelling case for bringing him home and securing the necessary support to provide care within our household.
“We refused to have him transferred to a rest home – that would have been traumatic for him, and for us. We had to arrange meetings with doctors to say that solution didn’t work for us, and instead we wanted to get support for him at home – a hospital bed, for example.
“We spent time taking turns to look after him and his quality of life was significantly better.”
