He Taonga Te Wareware: Connecting Older Maori Experiences of Wairuatanga with Mate Wareware (Dementia).

Mate wareware (dementia) is a complex disease of the brain that progressively inhibits memory and cognitive ability, affecting many Maori (the Indigenous people of Aotearoa New Zealand) kaumatua (elderly persons) in Aotearoa (New Zealand). Mate wareware care aims to protect and sustain wellbeing, yet Maori perspectives of wellbeing that consider wairuatanga (Maori spirituality) are often neglected within current treatment planning. This study investigates the presence of wairuatanga within kaumatua lives, drawing upon 61 interviews with kaumatua to glean a Maori understanding of mate wareware and to develop a diagnostic screening tool for mate wareware. Recorded responses were thematically analysed using reflexive qualitative analysis, informing four key themes that influence wairuatanga: he hononga tangata (social connection), turangawaewae (places of connection), tuakiritanga (identity) and mahi mauritau (mindful practices). These themes consider the value of creating rich and gratifying lifestyles for kaumatua that cultivate their spiritual wellbeing. This study validates diverse understandings and experiences of wairuatanga as essential to Maori wellbeing, affirming the relevance of wairuatanga to improve outcomes for Maori living with mate wareware.

Te Oranga O Te Roro: kaumatua perspectives on the development of a mobile app for mate wareware (dementia) awareness.

AIM: Mate wareware (dementia) presents a significant social and economic burden for Maori in Aotearoa New Zealand. Previous literature has highlighted the need to improve health literacy for Maori regarding the causes and management of mate wareware, yet there is a lack of Maori-centred educational resources. It was determined that a mobile phone application (app) could meet this need and that early consultation with Maori was required to ensure the digital solution would be culturally safe and relevant. METHOD: This study explored the perspectives of kaumatua (Maori elders) regarding how to cater the mate wareware mobile app to Maori. Through a qualitative approach based on Kaupapa Maori principles, two focus groups were held with 15 kaumatua. Focus group data were thematically analysed. RESULTS: The analysis identified four themes related to the content of the proposed app and its design features. "Information about mate wareware" and "Caregiver support" were prominent themes that kaumatua prioritised for inclusion in the proposed app. To ensure uptake, kaumatua emphasised that the "Access" and "Appeal" of the proposed app should be considered. CONCLUSION: The findings have informed the design of the Mate Wareware app and should be considered when developing other digital health interventions for Maori.

Living with Dementia in Aotearoa (LiDiA): A Feasibility Study for a Dementia Prevalence Study in Maori and Non-Maori Living in New Zealand.

INTRODUCTION: Recent estimations have projected a threefold increase in dementia prevalence in Aotearoa New Zealand (NZ) by 2050, particularly in Maori and Pacific peoples. However, to date, there are no national data on dementia prevalence, and overseas data are used to estimate the NZ dementia statistics. The aim of this feasibility study was to prepare the groundwork for the first full-scale NZ dementia prevalence study that is representative of Maori, European, Pacific and Asian peoples living in NZ. METHODS: The main feasibility issues were: (i) Sampling to ensure adequate community representation from the included ethnic groups, (ii) Preparing a workforce to conduct the fieldwork and developing quality control, (iii) Raising awareness of the study in the communities (iv) Maximizing recruitment by door-knocking, (v) Retaining those we have recruited to the study and (vi) Acceptability of study recruitment and assessment using adapted versions of the 10/66 dementia protocol in different ethnic groups living in South Auckland. RESULTS: We found that a probability sampling strategy using NZ Census data was reasonably accurate and all ethnic groups were sampled effectively. We demonstrated that we were able to train up a multi-ethnic workforce consisting of lay interviewers who were able to administer the 10/66 dementia protocol in community settings. The response rate (224/297, 75.5%) at the door-knocking stage was good but attrition at subsequent stages was high and only 75/297 (25.2%) received the full interview. CONCLUSIONS: Our study showed that it would be feasible to conduct a population-based dementia prevalence study using the 10/66 dementia protocol in Maori, European and Asian communities living in NZ, utilizing a qualified, skilled research team representative of the families participating in the study. The study has demonstrated that for recruitment and interviewing in Pacific communities a different but culturally appropriate approach is required.

Diagnostic accuracy of 10/66 dementia protocol in Maori kaumatua (elders) living in Aotearoa New Zealand.

AIMS: Dementia is an important health concern for Maori and therefore it is essential to explore the extent and impact of dementia in this community. The 10/66 dementia protocol, a widely used research tool for measuring the prevalence of dementia, was developed to minimise cultural and educational bias in comparisons of dementia prevalence across different countries and/or cultures. The aims of this study are to (i) adapt the 10/66 dementia protocol for use in research within the Maori community and (ii) test the diagnostic accuracy of the adapted (ie, Maori-friendly) 10/66 dementia protocol against the reference standard of a clinical diagnosis of dementia (or no dementia). METHOD: The sample included Maori aged 65 and over who had been assessed at a local memory service. Ten dementia cases and 10 controls were included. The sample was further enriched by the inclusion of 6 controls from a concurrent dementia-prevalence feasibility study in the local community. The Maori-friendly 10/66 dementia protocol was measured against the reference standard. Sensitivity, specificity, positive and negative predictive values and Youden's Index were calculated. RESULTS: The Maori-friendly 10/66 dementia protocol had a sensitivity of 90.0% (95% CI 62.8-99.4), specificity of 93.8% (95% CI 75.3-99.6), positive predictive value of 90.0% (95% CI 62.8-99.4), negative predictive value of 93.8% (95% CI 75.3-99.6) and Youden's Index of 0.83. CONCLUSIONS: Our study results provide preliminary evidence that the Maori-friendly 10/66 dementia protocol has adequate discriminatory abilities for the diagnosis of dementia. Our study also demonstrates that the Maori-friendly 10/66 dementia protocol has the potential to be used in a dementia-population-based study for Maori in Aotearoa New Zealand.

Diagnostic Accuracy of 10/66 Dementia Protocol in Fijian-Indian Elders Living in New Zealand.

The 10/66 dementia protocol was developed as a language and culture-fair instrument to estimate the prevalence of dementia in non-English speaking communities. The aim of this study was to validate the 10/66 dementia protocol in elders of Indian ethnicity born in the Fiji Islands (Fijian-Indian) living in New Zealand. To our knowledge, this is the first time a dementia diagnostic tool has been evaluated in the Fijian-Indian population in New Zealand. We translated and adapted the 10/66 dementia protocol for use in in Fijian-Indian people. Individuals (age ≥ 65) who self-identified as Fijian-Indian and had either been assessed for dementia at a local memory service (13 cases, eight controls) or had participated in a concurrent dementia prevalence feasibility study (eight controls) participated. The sensitivity, specificity, positive predictive value, and Youden's index were obtained by comparing the 10/66 diagnosis and its sub-components against the clinical diagnosis (reference standard). The 10/66 diagnosis had a sensitivity of 92.3% (95% CI 70.3-99.5), specificity of 93.8% (95% CI 75.3-99.6), positive predictive value of 92.3% (95% CI 70.3-99.5), and negative predictive value of 93.8% (95% CI 75.3-99.6). The study results show that the Fijian-Indian 10/66 dementia protocol has adequate discriminatory abilities to diagnose dementia in our sample. This instrument would be suitable for future dementia population-based studies in the Fijian-Indian population living in Aotearoa/New Zealand or the Fiji-Islands.

Living with Dementia in Aotearoa (LiDiA): a cross-sectional feasibility study protocol for a multiethnic dementia prevalence study in Aotearoa/New Zealand.

INTRODUCTION: Aotearoa/New Zealand (NZ) is officially recognised as a bicultural country composed of Maori and non-Maori. Recent estimations have projected a threefold increase in dementia prevalence in NZ by 2050, with the greatest increase in non-NZ-Europeans. The NZ government will need to develop policies and plan services to meet the demands of the rapid rise in dementia cases. However, to date, there are no national data on dementia prevalence and overseas data are used to estimate the NZ dementia statistics. The overall aim of the Living with Dementia in Aotearoa study was to prepare the groundwork for a large full-scale NZ dementia prevalence study. METHODS AND ANALYSIS: The study has two phases. In phase I, we will adapt and translate the 10/66 dementia assessment protocol to be administered in Maori, Samoan, Tongan and Fijian-Indian elders. The diagnostic accuracy of the adapted 10/66 protocol will be tested in older people from these ethnic backgrounds who were assessed for dementia at a local memory service. In phase II, we will address the feasibility issues of conducting a population-based prevalence study by applying the adapted 10/66 protocol in South Auckland and will include NZ-European, Maori, Samoan, Tongan, Chinese and Fijian-Indian participants. The feasibility issues to be explored are as follows: (1) how do we sample to ensure we get accurate community representation? (2) how do we prepare a workforce to conduct the fieldwork and develop quality control? (3) how do we raise awareness of the study in the community to maximise recruitment? (4) how do we conduct door knocking to maximise recruitment? (5) how do we retain those we have recruited to remain in the study? (6) what is the acceptability of study recruitment and the 10/66 assessment process in different ethnic groups? ETHICS AND DISSEMINATION: The validity and feasibility studies were approved by the New Zealand Northern A Health and Disability Ethics Committee (numbers 17NTA234 and 18NTA176, respectively). The findings will be disseminated through peer-reviewed academic journals, national and international conferences, and public events. Data will be available on reasonable request from the corresponding author.