Mundane mattering : how materialities come to matter in everyday life in dementia care units and in end of life care

To care for someone who is at the end of their life or someone who lives with a dementia disease is not about curing. Instead, care becomes concerned with what can make a situation as good as possible. Contributing to such efforts, this thesis articulates how materialities (such as hands, coffee cups, napkins, and newspapers) participate in specific enactments of care and of daily life in dementia care settings, and where people are cared for towards the end of life.

The thesis draws on interviews, workshops, and ethnographic fieldwork. In addition, visual representations in the form of illustrations and drawings were developed as a way to inquire, reflect on, and articulate issues concerning materialities. The tension in how material things are enacted as both significant and insignificant in these settings is underlined. That is, while the studies illustrate that it cannot be assumed what something ‘is’ and what it ‘does’, materialities in these settings are often routinized in such a way that they tend to be treated as definitive and trivial. It is in relation to this tension that the notion of “mundane mattering” is formulated. Mundane mattering denotes instances where informal practices of residents, patients, family members, and staff members involving seemingly mundane things present important possibilities for shaping daily life, identities, and agencies. In such instances materialities come to matter in particular and situated ways, which temporarily interfere with the trivialization of things. While these are more or less overlooked aspects of living and working in these settings, it is a complexity which staff members are already required to navigate. To create time and space for collegial reflection would not only serve to recognize this work, but it could also improve daily life for residents and their family members.

The thesis shows how visual representations offer means for understanding materialities as they introduce new ways of seeing a situation, making it possible to notice what is ethically at stake. Furthermore, visual representations provide spaces for reflecting on alternative ways of living and caring in these settings.

List of scientific papers

I. Cleeve H, Tishelman C, Macdonald A, Lindqvist O, Goliath I. 2018. Not juts things: the roles of objects at the end of life. Sociology of Health & Illness. 40(4):735-749.
https://doi.org/10.1111/1467-9566.12719

II. Cleeve H, Borell L, Rosenberg L. 2019. (In)visible materialities in the context of dementia care. Sociology of Health & Illness. 42(1):126-142.
https://doi.org/10.1111/1467-9566.12988

III. Cleeve H. 2020. Markings: boundaries and borders in dementia care units. Design and Culture. 12(1):5-29.
https://doi.org/10.1080/17547075.2020.1688053

IV. Cleeve H, Borell L, Rosenberg L. Drawing in-situ: matters of care and representation in daily life with dementia. [Submitted]