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

Abstract

Aim: The aim of this study is to investigate Māori (Indigenous peoples of Aotearoa New Zealand) understandings of dementia ( mate wareware) and develop a framework to inform assessment of cognitive impairment. Method: Qualitative, kaupapa Māori (M āori approach) research with 241 older Māori ( kaumātua) involving 17 focus groups across Aotearoa New Zealand (NZ) and eight families ( whānau) from one region. We thematically analyzed transcribed data from audio-recorded interviews. Results: Two overarching themes, namely, connection ( Tūhononga) and self ( Whaiaro), and eight subthemes in particular mind ( hinengaro), spirit ( wairua), body ( tinana), family ( whānau), social connection ( whanaungatanga), identity and role ( tuakiri), place ( wāhi), and ancestors ( tūpuna) emerged. Māori language ( Te Reo Māori) was important for cognitive health. Conclusion: The findings embedded in cultural values improve understanding of dementia ( mate wareware) in Māori. These themes can inform the assessment of older Māori with cognitive impairment. For those without cognitive impairment, the Tūhononga Whaiaro framework suggests factors potentially crucial for healthy aging in Māori.

Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021

“…Four studies specified that the research team included an Indigenous researcher or co-researcher (Lindeman et al, 2012; Martin & Paki, 2012; S. G. Russell et al, 2021; Taylor et al, 2012). Twelve studies reported Indigenous involvement in research through the formation of an Indigenous advisory, steering or reference group (Arkles et al, 2020; Browne et al, 2021; Bryant et al, 2021; Dingwall et al, 2017; Jacklin, Pitawanakwat, Blind, Lemieux, et al, 2020; Jacklin, Pitawanakwat, Blind, O'Connell, et al, 2020; Lindeman et al, 2012; Pace, 2020; Smith et al, 2011; Taylor et al, 2012; Walker et al, 2021; Webkamigad et al, 2020), 26 studies identified partnership or involvement of Indigenous community leaders, community members or organisations (Arkles et al, 2020; Cox et al, 2019; Finkelstein et al, 2012; Gilmour et al, 2016; Hocking et al, 2019; Hulko et al, 2021; Jacklin et al, 2015; Lanting et al, 2011; Lavrencic et al, 2019; Lindeman et al, 2012; Lo Giudice et al, 2016; Lo Giudice et al, 2011; LoGiudice et al, 2006; Martindale-Adams et al, 2017; Menzies et al, 2021; Pace, 2020; Radford et al, 2019; Radford, Mack, Draper, Chalkley, Daylight, et al, 2015; Radford, Mack, Draper, Chalkley, Delbaere, et al, 2015; S. G. Russell et al, 2021; Smith et al, 2016; Smith et al, 2009; Smith et al, 2008; Smith et al, 2007; Taylor et al, 2012; Webkamigad et al, 2020), and 13 studies reported specific involvement of Indigenous elders (Dudley et al, 2019; Hulko et al, 2010; Hulko...…”

“…Twenty-six studies directly involved Indigenous participants with cognitive impairment or dementia (Chen et al, 2019; Forbes et al, 2013; Gilmour et al, 2016; Hocking et al, 2019; Hulko et al, 2010; Jervis et al, 2007; Kirkpatrick et al, 2019; Lavrencic et al, 2019; Lo Giudice et al, 2016; Lo Giudice et al, 2011; LoGiudice et al, 2006; Menzies et al, 2021; Pu’un et al, 2014; Radford et al, 2019; Radford, Mack, Draper, Chalkley, Daylight, et al, 2015; Radford, Mack, Draper, Chalkley, Delbaere, et al, 2015; S. Russell et al, 2021; Russell et al, 2016; Smith et al, 2010; Smith et al, 2009; Smith et al, 2008; Verney et al, 2008; Wadsworth et al, 2016; Walker et al, 2021; Weiner et al, 2008; White et al, 2019). Of these studies, 23 (88.5%) commented on consent to participate, briefly stating that individual or proxy consent to participate was obtained either in writing or verbally (Chen et al, 2019; Forbes et al, 2013; Gilmour et al, 2016; Hocking et al, 2019; Hulko et al, 2010; Jervis et al, 2007; Kirkpatrick et al, 2019; Lavrencic et al, 2019; Lo Giudice et al, 2016; Lo Giudice et al, 2011; LoGiudice et al, 2006; Menzies et al, 2021; Pu’un et al, 2014; Radford et al, 2019; Radford, Mack, Draper, Chalkley, Daylight, et al, 2015; Radford, Mack, Draper, Chalkley, Delbaere, et al, 2015; S. Russell et al, 2021; Smith et al, 2010; Smith et al, 2009; Smith et al, 2008; …”

“…These studies explored experiences of caregiving and/or patient experiences and perceptions of living with dementia (n = 7) (Arkles et al, 2020; Chen et al, 2019; Fife et al, 2020; Finkelstein et al, 2012; Hulko et al, 2010; Jacklin et al, 2015; Lewis et al, 2020), psychiatric disorders and behaviours of nursing home residents with a high prevalence of dementia (n = 1) (Jervis & Manson, 2007), the oral health outcomes of people with dementia (n = 1) (Gilmour et al, 2016), the unmet needs of those with dementia living in remote communities (n = 1) (Smith et al, 2011), caregiver wellbeing (n = 1) (Korn et al, 2009), and the implementation of a resource designed to support caregivers (n = 1) (Martindale-Adams et al, 2017). Eleven studies explored perspectives, awareness, knowledge, experience and understanding of dementia and aging (Blix & Hamran, 2017; Browne et al, 2021; Cox et al, 2019; Dudley et al, 2019; Garvey et al, 2011; Hamran, 2017; Hulko et al, 2021; Jernigan et al, 2020; Lanting et al, 2011; Menzies et al, 2021; Pace, 2020; Wiese et al, 2020).…”

“…No papers elaborated on the methods or tools used to determine whether individuals had capacity to consent to research. Most studies (n = 20, 76.9%) discussed strategies that supported participation in study activities for people with cognitive impairment (Chen et al, 2019; Gilmour et al, 2016; Hocking et al, 2019; Hulko et al, 2010; Jervis et al, 2007; Lo Giudice et al, 2016; LoGiudice et al, 2006; Menzies et al, 2021; Pu’un et al, 2014; Radford et al, 2019; Radford, Mack, Draper, Chalkley, Delbaere, et al, 2015; S. Russell et al, 2021; Russell et al, 2016; Smith et al, 2010; Smith et al, 2009; Smith et al, 2008; Verney et al, 2008; Wadsworth et al, 2016; Walker et al, 2021; White et al, 2019). These strategies included conducting interviews in a familiar location and/or with a carer present.…”

Health effects of Indigenous language use and revitalization: a realist review

“…Some reports include multiple issues and/or techniques and will thus be listed more than once. Health Outcome Positive Neutral Negative a. Qualitative studies General [ 21 ], [ 35 ], [ 40 ], [ 41 ], [ 42 ], [ 43 ], [ 44 ], [ 45 ], [ 46 ], [ 47 ], [ 48 ], [ 49 ], [ 50 ], [ 51 ], [ 52 ], [ 53 ], [ 54 ], [ 55 ] [ 56 ] Education [ 57 ], [ 58 ], [ 59 ], [ 60 ], [ 61 ], [ 62 ], [ 63 ] b. Quantitative studies General [ 64 ], [ 65 ], [ 66 ], [ 67 ], [ 68 ], [ 69 ], [ 70 ], [ 71 ], [ 72 ], [ 73 ], [ 74 ], [ 75 ], [ 76 ], [ 77 ], [ 78 ], [ 79 ], [ 80 ], [ 81 ] [ 21 ], [ 82 ], [ 83 ], [ …”