'We Take Care of Our Own': A Theological Ethnographic Exploration of the Experience of Caregiving in the Context of Dementia Across Two Cultures
Lead Research Organisation:
University of Aberdeen
Department Name: Sch of Divinity, History and Philosop
Abstract
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.
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.
Organisations
| Description | Dementia care is often framed within Western medical and social models that prioritise cognitive autonomy, clinical interventions, and institutional care. These approaches tend to view dementia as a decline in personhood, equating identity with memory and rational thought. However, this research challenges such assumptions by exploring alternative understandings of dementia within two non-Western communities: the African Caribbean diaspora in the UK and the Indigenous Guna community in Panama. By employing theological ethnography and Indigenous research methodologies, this study uncovers how faith, memory, and community play a central role in sustaining identity and care for those living with dementia. Key Findings 1. Rethinking Memory and Personhood • In contrast to Western perspectives that equate memory loss with a diminished self, both African Caribbean and Guna traditions view personhood as relational rather than cognitive. • Among African Caribbean families, memory is preserved through oral storytelling, gospel music, and faith practices, ensuring that identity is sustained even when cognitive memory fades. • The Guna community embraces a holistic understanding of memory, where an individual's memories are not lost but absorbed into the collective consciousness of the community, the land, and the divine. 2. The Role of Spirituality in Dementia Care • Faith and spirituality provide emotional and social support in both communities. African Caribbean families turn to church communities, prayer, and religious music to reinforce a sense of identity and belonging for loved ones with dementia. • In the Guna tradition, memory and spiritual identity are closely intertwined. The practice of the 'Song of the Hammock' ensures that elders' wisdom is passed down through ritualised storytelling and song, even when cognitive faculties decline. • Unlike Western medicalised approaches, which often separate dementia care from spiritual life, these traditions demonstrate that spirituality can be a source of resilience, recognition, and healing in dementia care. 3. The Importance of Community-Based Care • African Caribbean families typically assume the responsibility of caregiving within extended family networks. However, systemic racism and economic constraints in the UK have made dementia care increasingly challenging, with many caregivers experiencing high levels of stress and limited access to culturally competent support. • In the Guna community, dementia care is entirely community-based. There are no institutional care homes, as elders remain integrated into family life, with caregiving duties distributed among relatives. Dementia is not seen as an individual crisis but as a shared responsibility of the entire community. 4. Decolonising Dementia Research and Care • The research critiques the dominance of Western biomedical perspectives, which tend to marginalise non-Western epistemologies of dementia care. By integrating theological ethnography with Indigenous research methods such as the 'Song of the Hammock', this study proposes a more inclusive, culturally grounded approach to dementia research. • The findings call for a shift in policy and practice to recognise and integrate community-based, spiritual, and relational models of dementia care. Impact and Significance This study makes an important contribution to dementia care, theology, and cultural studies by: • Offering an alternative to cognitive reductionism by affirming relational personhood in dementia. • Highlighting the need for culturally competent and community-oriented dementia care in the UK. • Demonstrating how Indigenous methodologies can enrich theological and medical discussions on dementia. • Advocating for a decolonial approach that respects the diverse ways communities understand and respond to dementia. By engaging with these diverse cultural and theological perspectives, this research challenges conventional assumptions and provides a richer, more inclusive understanding of dementia and care practices across cultures. It should be noted that we are still working on the theological implications of the study |
| Exploitation Route | Impact and Significance This study makes an important contribution to dementia care, theology, and cultural studies by: • Offering an alternative to cognitive reductionism by affirming relational personhood in dementia. • Highlighting the need for culturally competent and community-oriented dementia care in the UK. • Demonstrating how Indigenous methodologies can enrich theological and medical discussions on dementia. • Advocating for a decolonial approach that respects the diverse ways communities understand and respond to dementia. By engaging with these diverse cultural and theological perspectives, this research challenges conventional assumptions and provides a richer, more inclusive understanding of dementia and care practices across cultures. Future Applications and Wider Use The findings of this research have significant implications for policymakers, healthcare practitioners, religious communities, and researchers interested in dementia care. These outcomes can be taken forward in the following ways: • Policy and Healthcare Reform: The research highlights the need for culturally competent dementia care policies that integrate non-Western understandings of personhood, memory, and caregiving. Healthcare providers and policymakers can use these insights to develop more inclusive support structures that respect the spiritual and relational dimensions of dementia care. • Training and Education: The findings can inform training programmes for healthcare professionals, social workers, and faith leaders to improve dementia support within African Caribbean and Indigenous communities. Workshops and resources could be developed to help professionals understand alternative models of memory and care. • Faith-Based Dementia Initiatives: Religious communities can implement culturally and spiritually sensitive dementia care initiatives, including church-based support groups, memory cafés, and the use of music and storytelling in dementia-friendly worship services. • Community-Based Care Models: Organisations supporting carers and dementia patients can adapt the Guna community model of intergenerational caregiving, promoting family and community-based approaches rather than relying solely on institutional care. • Further Research and Cross-Cultural Studies: This study opens the door for further interdisciplinary research into dementia, theology, and decolonial perspectives. Future studies could explore similar themes in other Indigenous and diasporic communities, contributing to a more global understanding of dementia care. |
| Sectors | Communities and Social Services/Policy Healthcare Other |
| Description | Cambridge Anthropology-Theology Network |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | I presened a paper focused on the findings of the results. 20 people werein the group. My presentation sparked deep discussion about intercultural perspectives on mental health. It also intiated important conversations around method, epistemology, colonisation and dementia care. |
| Year(s) Of Engagement Activity | 2025 |
| URL | https://www.facebook.com/susie.triffitt/photos/hey-everyonehoping-youre-having-a-great-week-and-enjo... |
| Description | Talk to magers of a dentia care business in Sydney |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | I spoke to a human resrouces group. theyare responsible for teh outward face of HammondCare teh organsiaiton I was invited to talk to. The intention was to enable staff to more fully understand intercultural issues around dementia. |
| Year(s) Of Engagement Activity | 2024 |