Māori approaches to supportive communication – living well with mate wareware (dementia).

Communication changes are commonly experienced by people with dementia and have substantial impacts for both the person with dementia and their caregivers. For Māori, who face high prevalence rates of dementia, appropriate care is needed. Despite the reported benefits of communication interventions and a growing body of research exploring Māori perspectives on mate wareware (dementia), no studies have directly investigated communication support for Māori experiencing mate wareware. The overall aim of this thesis was to identify methods of communication support for whānau (families) experiencing mate wareware, from Indigenous and Māori viewpoints. The thesis began with an exploration of mātauranga Māori (Māori knowledge) to learn from Māori knowledge relating to communication and consider the application of mātauranga Māori in speech and language therapy. Methods used in communication-focused dementia interventions developed for Indigenous populations were then reviewed. The final phase explored the lived experiences of whānau Māori to identify perspectives and needs for communication support. The research was guided by an overarching methodological framework that incorporated mixed methods research principles, Kaupapa Māori research principles, and He Awa Whiria (a braided river). The combination of methodologies developed a framework that supported research at the interface of knowledge systems, whilst focusing on the centring and development of Māori and Indigenous knowledge. Kaupapa Māori research provided culturally specific methods for research conduct and a focus on reclaiming space for Māori ways of knowing and developing knowledge. Mixed methods philosophy encouraged the use of the most appropriate tools to answer the individual research questions. He Awa Whiria provided a framework for the simultaneous use of Indigenous, Māori, and Western knowledge systems. Concepts associated with these methodologies were built into a community engagement project with Māori communities and incorporated throughout the remainder of the thesis. Phase one (chapters three and four) of this research focused on studying mātauranga Māori (Māori knowledge) relating to communication and considering implications for the speech and language therapy field. The need for this research stems from the dominance of Western scientific viewpoints in speech and language therapy research and the lack of Māori communication models. Two thousand, six hundred and sixty-nine ancestral sayings were analysed using a method developed specifically for analysis of Māori ancestral sayings. Literal meanings and translations, contextual information, literary features, and philosophical meanings were sought and interpreted, and 368 relevant sayings were organised into themes. The following themes were developed: 1) āhuatanga karere (message and messenger characteristics), 2) mana reo (power and influence of language), 3) reo ā-tinana (body language), 4) te whē (sound), 5) tohu (signs, instructions, marks, visions, omens), 6) whakarongo (listening, hearing, obeying), 7) whanaungatanga (relationships), and 8) whatumanawa (open expression of emotion). In addition, findings showed that communication through the lens of Māori ancestors involved social, spiritual and environmental aspects. The author then considered this knowledge alongside other Indigenous speech and language therapy research, providing suggestions for the inclusion of Indigenous communication knowledge in research and practice. Phase two (chapter five) sought to further understand the application of mātauranga Māori for speech and language therapy in Aotearoa New Zealand. Māori speech and language therapists (n=11), speech and language therapy students (n=6), researchers (n=2), an educator (n=1), kaumātua (n=1), and kaimahi aukaha (communications support worker) (n=1) completed an online mixed methods survey. Findings showed the importance of mātauranga Māori to the identity of Māori clients, whānau, and speech and language therapists, and the ability to provide care in accordance with manaakitanga (support, respect, care). Mātauranga Māori was valued as a body of knowledge distinct from standard practice and believed to enhance practice within speech and language therapy. Numerous taonga (treasures) held within mātauranga Māori can be drawn on to support communication and connection. Solutions to remaining barriers were also discussed including increased time to effectively apply mātauranga Māori, development of appropriate therapy resources, access to te reo Māori, and quality learning opportunities for students and speech and language therapists. Phase three (chapter six) explored the dementia context, identifying and synthesising findings of communication intervention studies for Indigenous communities through a systematic review. Searches of databases and grey literature were conducted in 2023 and updated in 2024. This led to the identification of six studies in seven reports. No studies focused on supporting communication skills and abilities of people with dementia, their families, or healthcare professionals. All six identified studies reported evaluations of health communication interventions. Using textual narrative synthesis, intervention characteristics and factors relating to their effectiveness were synthesised. Interventions were tailored for Indigenous communities in Canada, the United States, and Australia. Content and resources varied across interventions. Benefits of the interventions were described and three key factors relating to their effectiveness identified: 1) Indigenous people, cultures, and languages represented in resources, 2) appropriate methods and settings for knowledge sharing, and 3) communication, connection, and collaboration. Findings identified the importance of tailoring interventions to local communities and the potential for common elements to support development of health communication interventions in Indigenous contexts. Phase four (chapter seven) addressed the primary aim of this thesis by exploring the lived experiences of whānau Māori (Māori families) on communication changes and communication support in the mate wareware (dementia) context. Nine Māori people with mate wareware and eight whānau members took part in semi-structured interviews. Six of these participants also attended a focus group to evaluate the interview findings and provide further perspectives on mate wareware care pathways. Following constructivist grounded theory, constant comparative analysis was used to analyse data. Analysis of interviews highlighted diverse perspectives on a range of communication changes, with many people with mate wareware and whānau members experiencing impacts such as negative emotions and social withdrawal. While whānau used a number of strategies to support communication and maintain connection, there were limitations in access to speech and language therapy services. Findings also highlighted key considerations for health and healthcare communication, including valued communication styles and information formats. Focus group discussions reinforced interview findings and identified additional considerations for a mate wareware care pathway supportive of communication, such as discussion of relevant legal considerations, the nature of whānau discussions, and access to support for wider whānau members. Taken together, findings from this thesis inform practices of speech and language therapists and healthcare professionals engaging with whānau experiencing mate wareware. Findings also provide insights for future development of policy, dementia care pathways, and speech and language therapy in Aotearoa New Zealand. Future initiatives across these areas should consider the value of including and learning from mātauranga Māori as well as Māori values relating to care, communication, and connection. In addition, support that is whānau-centred and tailored to preferences and needs is important across supportive communication practices. Lastly, findings highlighted the need for access to formal communication support and appropriate interventions. Future research is needed to develop and evaluate interventions across areas of communication support ensure that whānau receive services responsive to their needs.

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