Embodied meaning-making in the experiences and behaviours of persons with dementia

Background: The aim of the study was to explore and articulate how meaning-making appears and how meaningfulness is experienced in persons with severe dementia. Although there is little knowledge about meaning-making and experience of meaningfulness for this group, this article assumes that persons with dementia are as much in need of meaningfulness in life as any others, and hence, that they are involved in the process of meaning-making. Methods: The study was conducted using a qualitative method with exploratory design. Ten patients with severe dementia at a specialized dementia ward at an old age psychiatric department in hospital were observed through participant observation performed over four months. The field-notes from the observation contained narratives carrying with them a dimension of meaning played out in an everyday setting and thus named Meaning-making dramas. The narratives were analyzed looking for expressions where experiences of meaning-making and meaningfulness could be identified. Results: The narratives demonstrate that persons with severe dementia are involved in processes of meaning-making. The narratives include expressions of meaning-making, and of interactions that include apparent crises of meaning, but also transitions into what may be interpreted as meaningfulness based on experiences of significance, orientation and belonging. The role of the body and the senses has proved significant in these processes. The findings also suggest that experiences of meaning contribute to experience of personhood. Conclusions: The relevance to clinical practice indicates that working from a person-centred approach in dementia care also includes paying attention to the dimension of meaning. This dimension is important both for the person living with dementia and for the people caring for them. Acknowledging meaning as a central human concern, it is crucial to seek understanding and knowledge about the significance of meaning in vulnerable groups such as persons with dementia. Keywords: embodiment; meaning-making; meaningfulness; personhood; severe dementia; spirituality.