Becoming-dementia as an Immanent Condition of Co-dwelling in Everyday Life

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Abstract

What have those living with dementia lost? If they have lost aspects of their mind and self, who are they now? Are they ‘normal’? Prevailing medical, therapeutic and sociopsychoanalytic interventions and studies on dementia, largely influenced by Tom Kitwood’s person-centred approach, have focused mainly on revealing and evaluating the remaining intact bodily abilities and functions beyond loss. In contrast to this predominant understanding of dementia, my decade-long involvement in a Jewish Care Home as a volunteer and researcher has raised ontological, epistemological and practical critiques, acknowledging that we are never beyond loss but always alongside it, and that we simply do not know how to dwell well with it. Although the expressive and performative words, gestures and behaviours of those with dementia are often regarded as inarticulate, repetitive and nonsensical, these are the lived worlds of dementia that those affected feel, experience and live through, whilst continuously making relations and familiarising themselves with people, things, and their surroundings. This demands a paradigm shift in the ontological, epistemological and practical horizon within the study of dementia. Critically developing Canguilhem’s notion of the normal and the abnormal, Ingold’s dwelling perspective and Deleuze’s concept of becoming, I redefine dementia not as a fixed mode of being but as a continuous process of becoming-dementia through an attentive engagement with one’s immediate surroundings. In more detail, this study explores the ways in which people challenge the taken-for-granted concepts of loss and abnormality in five different dementia contexts: ethics, repetition, time, agency and emplacement. By rejecting medical preconceptions or categorisations, this study focuses on uncovering what loss does in everyday life rather than asking what loss means or what people lose. In particular, this study emphasises bodily movement, sensory perception and affect, not because of the language deterioration during dementia trajectories but because of a new way of understanding and new reality that those affected practise in daily life. Consequently, this study illustrates the immanent potential of the anthropological view for thinking and dwelling with those living with dementia alongside their limits and implications. This study is thus an autobiographical ethnographic testimony of my past decade living, learning, volunteering, studying and most importantly co-dwelling with those living with dementia. This is a collaborative co-production created with those involved, as without the participation of those affected and the co-presence of significant others, my work could not be done. Accordingly, there is neither a beginning nor end to this study, but a moving forward and generating dementia becoming as the lives of those affected and those who care for them unfold.

Keyword(s)

affect; bodily movement; co-dwelling; dementia-becoming; loss; normal and abnormal; senses perception

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