'We Take Care of Our Own': A Theological Ethnographic Exploration of the Experience of Caregiving in the Context of Dementia Across Two Cultures

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How can the perspectives of an indigenous community and a diaspora community on the core issues of dementia care-love and kinship-deepen theological understandings and practices of dementia care? What are the theological and practical implications of this for Christian communities globally and societies more generally? While much of the research on dementia has focused on finding a cure, with no success, the pressing need is to understand and support care for those with dementia. Research has been done on the ways in which religious communities can be mobilised to utilise the sources of spiritual and social capital that they represent. However, the vast majority of this work has been done in a Western context, using Western assumptions about dementia, personhood, care, and what an appropriate practical theological response might be. To date there has been no intercultural work done exploring the ways in which dementia is conceived and responded to practically and theologically across cultures. Certain indigenous and minority ethnic cultures have distinctive practices surrounding care for those with dementia and distinctive understandings of dementia and dementia care through their own lens of theology and spirituality. This study intends to provide a platform for these silenced voices so that they can inform, critique, and equip majority Western approaches to caring for those with dementia.In this study, Prof. John Swinton proposes to work alongside an indigenous community, Gunadule people in Panama, and a diaspora community, Afro-Caribbean people in the United Kingdom. As a member of the Afro-Caribbean community, Prof. Swinton will carry out the research in the UK. A Gunadule indigenous researcher will research that community.Both of these groups have a worldview that contrasts with European individualism. In distinct ways, they encounter other human beings as grandmothers and grandfathers, uncles and aunts, brothers and sister. They have in common a sense of kinship within which 'we take care of our own'. Each group also has a history of oppression and being silenced, affecting how they care and relate to caring agencies. They each interpret these experiences through unique forms of Christian faith and practice. Listening to such perspectives will add a vital and missing dimension to the global practical theology conversation.In examining these practices and perspectives, the study will ask what the worldwide church as a significant source of spiritual capital, and a significant provider of care and support for people with dementia and their carers and supporters, can learn from understanding and implementing the different care perspectives offered by these two indigenous and diaspora groups.Prof. Swinton is an internationally recognised researcher in dementia, mental health, and theology, with expertise in qualitative research methods. His 2020 book Finding Jesus in the Storm: The Spiritual Lives of Christians Living with Mental Health Challenges, based on the findings of an innovative, extensive qualitative research project, has received the Aldersgate Prize for scholarly inquiry that challenges reductionistic trends in academia and enlivens human flourishing. He is also author of Dementia: Living in the Memories of God (2012) which received the Archbishop of Canterbury's Ramsey Prize for Theological Excellence. Swinton is a leader in the field of Practical Theology and a pioneer in the method of Theological Ethnography. His book Practical Theology and Qualitative Research co-authored with Harriet Mowat (2nd ed., 2016) is widely used as a textbook in Europe, the United States, Australia, New Zealand, and beyond. This project on caregiving and dementia will build upon his expertise and expand his leadership in the fields of theology and the study of dementia to include forms of practical theology that highlight the voices and examples of indigenous and diaspora communities.