He Tūhononga Whaiaro : A Kaupapa Māori Approach to Mate Wareware (Dementia) and Cognitive Assessment of Older Māori

Introduction

Increasingly, culture is recognized as a critical factor in the assessment of cognition (Ardila, 2005). The American Psychiatric Association (2013) acknowledges this in Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5), stipulating culture as a critical influence on cognitive assessment. In Aotearoa New Zealand (NZ), Dudley et al. (2014) found that overwhelmingly Māori wanted to see Māori content in neuropsychological testing, which they considered would facilitate improved performance on cognitive tasks. In the most recent update to their position statement, “Dementia in Older People,” the Australian and New Zealand Society of Geriatric Medicine noted the importance of choosing an appropriate cognitive assessment tool for a patient, with consideration of their cultural background (Australian & New Zealand Society for Geriatric Medicine, 2019). In a review article examining the influence of language and culture on cognitive assessment tools used in the diagnosis of early cognitive impairment and dementia, Ng and colleagues (2018) noted important variation. This variation can influence the validity and sensitivity of translated cognitive assessment instruments. In particular, the translation of tools from one language and culture to another can introduce “method bias” with differences in administration and scoring. In addition, translation can alter the psychometric properties of items within the tool, which is known as differential item functioning. The review noted variation in multiple domains, including attention and orientation, visuospatial, word recall, and picture naming.

The assessment of a patient’s cognition is more than merely the application of a cognitive assessment tool. Cultural factors also need consideration during a comprehensive assessment and diagnosis of a person’s cognitive health. The New Zealand Framework for Dementia Care (Ministry of Health, 2013) is clear-cut in its guidance that cultural factors are essential in the assessment and management of dementia. In addition to the assessment and management of dementia, the approach and perception of culture to cognitive impairment and dementia may differ (Calia et al., 2019; Elder, 2013; Hillman & Latimer, 2017). Cultural psychologists have found different patterns of thinking and understanding in different societies and cultures (Varnum et al., 2010), some having a more analytic pattern and others more holistic, some interdependent versus independent.

In NZ, various models have been used to describe the domains that contribute to Māori health. Some of the most well known of these are the Whare Tapa Whā model (Durie, 1985), the Te Wheke model (Pere, 1984), and, more recently, the Meihana model (Pitama et al., 2007). A Māori understanding and assessment of healthy cognition and cognitive impairment is an area that has had little research undertaken. Kaumātuatanga O Te Roro—The Aging Brain is a qualitative research study initiated in 2016 that aimed to expand the understanding and knowledge (mātauranga) of dementia in Māori.

We have previously outlined factors that are important in understanding dementia (mate wareware) for Māori. These factors included looking at causes (Ngā Pūtake), protective factors (Ngā Rongoā), acceptance of illness and behavioral change (Aroha and Manaakitanga), caregiving (Kaitiakitanga), and dementia services (Ngā Ratonga) (Dudley et al., 2019). In this article, we outline a framework describing the themes important for assessing cognitive health, and potentially healthy aging in older Māori (kaumātua).

Method

To ensure the rigor of the research, we undertook a multicenter study in both the North and South Island of NZ. Tribal (Iwi) representatives were contacted in different areas of NZ and organized for us to meet with their local older Māori (kaumātua). We requested meeting with older Māori affected by dementia (mate wareware) and their family or caregivers, but we did not exclude older Māori without dementia (mate wareware) if they wished to attend the meeting. We conducted research using a Māori methodology (kaupapa Māori) approach, which is by Māori, for Māori, and with Māori and led by a Māori worldview. The Rangahau website has more information on Kaupapa Māori research (http://www.rangahau.co.nz).

Our research used a purposive sample of 241 older Māori and eight different families (whānau) who participated in 17 face-to-face focus groups across seven study locations throughout NZ, from November 2016 to August 2017. Interviews were generally conducted on local tribal meeting places (Marae), and older Māori were sometimes accompanied by family (whānau) or carers. The average age of participants was 76 years with a range from 50 to 87 years old, and 73% female. We provided data collectors with training and instituted standardization protocols because we used multiple interviewers to collect the data. Table 1 shows some of the interview questions used.

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Table 1.

Sample Interview Questions Asked Regarding Dementia (Mate Wareware).

1. What happens to the person when they get these changes? What things do you notice?

2. What words do you use when you are talking about this?

3. Why do you think people get like this?

4. What things is it important for you to be able to think, remember and do?

5. What are the most important things to ask about to check if someone has problems with thinking, remembering, and doing things?

6. What understanding do we have from the Māori world about this?

7. Do you have any stories from your ancestors or family that help you to understand this? How has it affected you?

Most of the interviewers were Māori health researchers or clinicians. Furthermore, to help capture the depth and richness of Māori language (te reo Māori) in interviews, they could be undertaken in either Māori or English. Of all participants, 59% reported speaking the Māori language “very well,” “well,” or “fairly well.” Approximately one third of the interviews were conducted in the Māori language, but when interviews were conducted in English, participants almost always used some Māori language during the interview. Written informed consent was obtained at the time of the interviews. We interviewed and took audio recording of individuals and small groups and discussed factors that were important in the causation, assessment, and management of cognitive impairment in the Māori world (te ao Māori). Contact duration (greeting, information giving, consent, and interview) at each site was 3 to 4 hr, split up by meal breaks, in a 1-day session.

We transcribed the audio interview data and checked it for accuracy. Following initial coding, we identified themes within the data and refined this within our research group using a group work (mahi-a-rōpū) approach, which is a collective Indigenous approach to data analysis (Gifford et al., 2014; Wilson et al., 2019). The research team came together following individual members undertaking a preliminary analysis across the manuscripts to generate open and focused codes. The team then met and discussed the coding and sorted these into themes and subthemes (Wilson et al., 2019). Upon consensus, the conceptualization of the themes and subthemes identified occurred. Data saturation in regard to theme development was reached approximately two thirds of the way through analyzing the data, but we continued to ensure representation of data from around all of NZ. Six of the study team were involved in the coding and thematic analysis.

This analytic process enhanced rigor by using multiple coders and reaching an agreement about the themes generated by all those participating. Further verification occurred with representatives of the participant groups. We continued to develop these findings into a model, He Tūhononga Whaiaro, for understanding and evaluating cognitive impairment in Māori. As Māori health researchers, while we used an inductive process (theme development emerging from the data), we were cognizant that our prior experiences may have influenced the analysis. However, using a group work (mahi-a-rōpū) approach for the data analysis and interpretation, we believe, decreased the potential effect of bias.

Results

This study contributes the He Tūhononga Whaiaro (connection and self) model comprising two overarching themes, namely, connection (tūhononga) and self (whaiaro), that reflect wellness of the brain (hauora o te roro). These two themes have related subthemes: place (wāhi), ancestors (tūpuna), family (whānau), and social connection (whanaungatanga); and the spirit and spiritual realm (wairua and wāhi ngaro), mind (hinengaro), body (tinana), and identity and role (tuakiri), respectively (Figure 1). Evident within these two themes and the subthemes is the vital role of Māori language.

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Figure 1.

He Tūhononga Whaiaro (connection and self) model: Themes and subthemes.

Some participants viewed Māori language as essential for the well-being of the brain—Hauora o te Roro. We have previously discussed some of the words used to describe thinking and memory impairment and the importance of Māori language in dementia (mate wareware); (Dudley et al., 2019). We found various levels of proficiency in Māori language, with some participants indicating the therapeutic benefits of Māori language for their thinking while others had less proficiency. On occasion, some family (whānau) observed a decrease in their older relative’s use of Māori language as their cognitive impairment progressed. In contrast, others used Māori language more often as the following participants recounted:

Reo Māori (Māori language) is a gift. It is medicine. It is health for our thoughts. (Wellington)

I found my dad speaking the Reo (Māori language) more often when he was going through dementia. (Whakatane)

Moreover, wellness of the brain (hauora o te roro) relies on the dynamic interconnectedness of the themes, connection (tūhononga) and self (whaiaro), and their respective subthemes.

Discussion

In this qualitative study with older Māori (kaumātua) and family (whānau) about the Māori aging brain and dementia (mate wareware), we found themes similar to but not the same as existing models of Māori health. The Whare Tapa Whā model (Durie, 1985) was outlined by Professor Sir Mason Durie in 1982 and is a well-known and accepted model in Māori health. Another popular model for family is Te Wheke, described in 1984 by Rose Pere (1984). More recently, in 2007, the Meihana model (Pitama et al., 2007) provided a guide for clinical assessment and intervention with Māori clients and family accessing mental health services. There are some parallels in these models, all having a core of four similar themes.

The core components of mind (hinengaro), spirit (wairua), body (tinana), and family (whānau) were re-affirmed in our study, which suggests these core Whare Tapa Whā components remain as germane as they were in 1982, emphasizing its strength and relevance as a model of health. Our study identified other themes that are useful in the assessment of older Māori. Some of these are similar to previous models, and Table 2 shows the similarities and differences between the models. It is useful to note that the development of each of these models occurred with distinct purpose, which possibly accounts for their differences.

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Table 2.

Comparison to Other Models of Health in Te Ao Māori (the Māori World).

Whare Tapa Whā	Te Wheke	Meihana	He Tūhononga Whaiaro
Wairua (spirit)	Wairua	Wairua	Wairua
Hinengaro (mind)	Hinengaro	Hinengaro	Hinengaro
Tinana (body)	Tinana	Tinana	Tinana
Whānau (family)	Whānau	Whānau	Whānau
	Waiora (well-being)
	Whanaungatanga (social connection)		Whanaungatanga
	Mauri (life force)
	Mana Ake (unique identity)		Tuakiri (identity and role)
	Hā a koro ma, a kui ma (breath of life from forbearers)		Tūpuna (ancestors)
	Whatumanawa (the open and healthy expression of emotion)
		Taio (physical environment)	Wāhi (place)
		Iwi Katoa (societal structures)

The existing literature provides support for the themes we identified. Professor Sir Mason Durie, in his book Whaiora, outlines the history of Māori health in NZ and provides essential Māori values and concepts that inform the daily lives of Māori (Durie, 1998). For instance, more than some other cultures, Māori may live intergenerationally in one residence (Kerse & LiLACS NZ, 2014). Tūrangawaewae (a place to stand) is a well-known and influential concept for Māori (Te Ahukaramū Charles Royal, 2020), and so it is of little surprise that place was an identified theme in our study. Førsund et al. (2018) have previously identified that place and “lived space” are essential factors in person-centered care and the preservation of continuity and identity for people with dementia. They defined lived space as the “. . . space and its geographies and it is also related to the feeling of being home or the conceptualization of ‘being in place’” (p. 2).

Longitudinal studies suggest that social contact might prevent or delay dementia, and social isolation is a risk factor for dementia. Still, there is currently an absence of evidence from intervention studies that social activity prevents cognitive decline or dementia (Livingston et al., 2017). The importance of the mind, spirit, family, and body in dementia assessment and management is well established in the published literature (Livingston et al., 2017). In a study in NZ about spirituality in the hospice setting, 69% said they wanted spiritual care (Egan et al., 2017). MacKinlay and Trevitt (2007) have suggested that “. . . the search for meaning, connectedness and hope becomes more significant as older people are faced with the possibilities of frailty, disability and dementia” (p. S74). A small study in NZ by Perkins et al. (2015) showed identity and relationships to be the most critical aspects of the life of people with moderate to advanced dementia. Similarly, in the United States, Cohen-Mansfield et al. (2006) interviewed 104 people with dementia, and the roles they currently participated in were regarded as important by them (rated up to 4.4 out of 5 in importance).

Through the course of the research, participants highlighted the importance of culturally competent assessors who can undertake holistic assessments of older Māori and engage family throughout the process. The themes Tūhononga and Whaiaro (connection and self) can assist and guide those undertaking assessments with older Māori. Table 3 provides some examples of how to assess the areas identified in the subthemes. We are currently developing several assessment tools to improve the review of these domains for Māori.

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Table 3.

Examples of How to Assess He Tūhononga Whaiaro Domains.

Domain	Assessment—example questions
Wairua (spirit)	How do you look after your wairua?
Hinengaro (mind)	Formal Cognitive Assessment Tool
Tinana (Body)	Activities of Daily Living Assessment, medical issues, medicines (rongoā) used
Whānau (family)	How do you get on with your whānau?
	How are you involved with your mokopuna (grandchildren)?
Whanaungatanga (social connection)	Do you have people come to visit or stay?
	Are you able to help (manaaki) people like you used to?
Tuakiri (identity and role)	Have your roles in your whānau or community changed?
Tūpuna (ancestors)	In what ways are your tūpuna important to your health?
Wāhi (place)	Where is the place you feel most connected to?

The results may be useful to other population groups such as other indigenous and minority peoples, although we caution readers of this qualitative research using the findings outside of the context of older Māori. Having offered this caution, this was a study carried out across NZ, capturing diversity within older Māori. The findings were affirmed by representatives of the participant groups at follow-up meetings, at tribal meeting places (marae), community groups, and with other health professionals working with older adults with dementia (mate wareware).

In conclusion, from this research, two overarching themes, Tūhononga (connection) and Whaiaro (self) and their respective subthemes are offered as a culturally embedded approach for working with older Māori with dementia (mate wareware). These themes have the potential to enhance the assessment of older Māori with cognitive impairment. However, further research is needed to identify if He Tūhononga Whaiaro could also be useful in the assessment of older Māori without cognitive impairment.

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