Looking after abuelos: an ethnography of dementia care in an Andalusian town

This thesis explores the lived experiences of people with dementia and their care-givers in Andalusia, Spain. An ageing world population has led to rising dementia rates and a global crisis narrative around dementia. Increasingly western countries are turning to long-term care institutions to manage dementia care. However, despite Spain’s international status as a ‘western’ country, holding one of the world’s highest life expectancies, with rising dementia rates, the majority of people with dementia in Spain are cared for at home by family. Andalusia, a region known for its strong kinship networks, thus provides a valuable context to explore dementia care, as despite its ‘western’ status, people are adapting care-giving into long-established patterns of family life. This research delves into dementia, personhood, kinship and care through data drawn from fourteen months of ethnographic fieldwork in a rural Andalusian town, using a methodological approach informed by occupational therapy and anthropology. It uncovers how intergenerational kinship networks in Andalusia remain central to a deeply interdependent personhood that shapes local dementia care strategies. Local attitudes towards dementia care are analysed as shifting alongside social transformations, with people increasingly demanding state-funded formal care. The gendered nature of dementia care in Andalusia is shown to prevail, and the role of the middle-aged woman as matriarch of kinship care is identified. The thesis also explores spiritual aspects of dementia care through analysis of the town’s Virgin Mary saints’ statues and fiestas. In revealing how local collective rituals are incorporated into dementia care this research shows the need for a shift from individualist, person-centred dementia care approaches towards explorations of dementia care as profoundly ‘community-centred’. It also exposes the complex power relations underpinning formal dementia care by opening the doors to local care institutions. The thesis demonstrates how, as dementia care formalises in Andalusia, people strive to (re)create kinship and solidarity to find meaningful connections through a profoundly community-centred care. Approaching care as a relational need, co-created through social interactions formed within specific contexts, enables recognition of care’s cultural diversity and the need to consider not just the person but the community and culture that shape dementia care. This work helps deconstruct prevailing dichotomies within care research and unlocks learning between occupational therapy and anthropology to show the benefits of invoking a caring participant-observation approach. As we continue moving through the Covid-19 pandemic and attempt to navigate a socially-distanced world, it is even more vital that we understand human interdependency, and recognise the value of community-centred dementia care.