“Māori culture Is invisible throughout the whole process of cognitive testing,” says Neuropsychologist Dr Margaret Dudley. “It’s not present in any way, shape or form.”
The tools used to assess a person’s memory and thinking abilities in Aotearoa New Zealand have been developed overseas within a western world view, and do not include any knowledge from the Māori world, she explains.
“Misdiagnosis of Māori often occurs because assessment tools are not developed for Māori. This isn’t just in terms of the tests themselves, but also how the tests are administered.”
As lead researcher of a large University of Auckland study into the relationship between Māori and dementia, Dr Dudley and her team are working to address this cultural bias. The dual aim of the study is to develop a kaupapa Māori theory of dementia and culturally relevant screening tools.
“All the participants in our study felt they would probably have performed better if there was material that was more relevant and familiar to them.”
The number of Māori who experience traumatic brain injury, stroke or suffer from dementia is high relative to the total population, Dr Dudley told delegates at the New Zealand Psychological Society’s jubilee conference last month.
In her keynote address, ‘But you never asked me anything I know!’, Dr Dudley informed delegates that “culture is central to good health and wellbeing, yet current protocols and processes that accompany the administration of neuropsychological assessments are devoid of any knowledge from te ao Māori.”
Through interviews with over 200 kaumātua ropu (Māori elders), and whānau who care for family members with dementia, the research team has identified some key findings.
“We have found that having a strong, positive cultural identity seems to be useful in protecting oneself against dementia,” says Dr Dudley. Being connected and involved in marae, for example, appears to have a protective factor.
Being on marae is also beneficial for kaumatua who have developed dementia, because it helps them access “a reserve tank of old memories” such as te reo Māori, which they may have spoken as children.
“Having this cognitive reserve can ward off or slow down the development of dementia,” says Dr Dudley. “It’s an exciting finding,”
Another key finding from the study is the importance of having a holistic approach to dementia. “We have found for Māori, that treating the wairua, the spiritual side, is just as important as addressing the physical and physiological needs. It’s a package.”
Dr Dudley says the new screening tool for Māori will include a component of spirituality. “I can’t stress this enough. Taking care of the wairua is really important. If this isn’t addressed, the patient isn’t going to be as engaged as they should be. I believe it’s a fundamental part of the pathway for providing healthcare for Māori.”
A third finding of the study is the guilt whānau feel if they can no longer care for their family member. “Traditionally, the Māori way is to keep our elderly at home and take care of them,” she explains. “However, with the demands of contemporary society, whānau are often riddled with feelings of guilt that they should be caring for their family member when they just can’t.”
Dr Dudley hopes to submit a paper on the study’s findings by the end of the year, but it will be a couple of years before a new more culturally appropriate tool for diagnosis is introduced in New Zealand. Loosely based on the Kimberley Indigenous Cognitive Assessment tool (KICA), which was developed and validated in a number of Indigenous communities in the Kimberley region of Western Australia, the tool will be as user friendly as possible, says Dr Dudley. “We want it to be used as much as possible, which means shaping a tool that non-Maori clinicians will readily utilise.”
Alongside a diagnostic tool, the team is developing information to help Māori better understand and manage dementia. These include a phone app and pamphlets that will provide clear and accessible information about identifying dementia, getting early diagnosis, caring for someone with dementia, and modifiable risk factors and lifestyle changes that may prevent or delay the onset of the disease. “I feel really strongly about this,” says Dr Dudley. “We need to provide this information so whānau can empower themselves.”
The University of Auckland study into the relationship between Māori and dementia is the first of its kind in New Zealand and has received more than $1 million from the Health Research Council of New Zealand.
In 2011, 1,928 Maori were estimated to have had dementia and this number is expected to increase to 4,493 by 2026.