“I want to get out… I’ve got a child at home”: intersubjectivity, reality disjunctures and distress in the care of people living with dementia in the acute hospital

Pilnick, Alison ORCID: https://orcid.org/0000-0003-0987-8760, O’Brien, Rebecca ORCID: https://orcid.org/0000-0003-0300-8430, Beeke, Suzanne ORCID: https://orcid.org/0000-0002-6772-2820, Windeatt-Harrison, Isabel ORCID: https://orcid.org/0000-0002-6657-4723, Bridgstock, Lauren ORCID: https://orcid.org/0009-0004-0807-5477 and Harwood, Rowan H. ORCID: https://orcid.org/0000-0002-4920-6718 (2025) “I want to get out… I’ve got a child at home”: intersubjectivity, reality disjunctures and distress in the care of people living with dementia in the acute hospital. Social Science and Medicine. 117805. ISSN 0277-9536

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Abstract

The pivotal role of language in achieving and maintaining intersubjectivity in interaction creates particular problems where one party has a medical condition affecting language use. Dementia can have significant impact on language comprehension, expression and memory; this creates challenges not only for people living with dementia (PLWD) but also those who care for them. In UK hospitals approximately 25% of beds are occupied by PLWD (Alzheimer’s Society, 2009) and the need for improved care is widely acknowledged. One specific challenge is the issue of competing realities, where a PLWD may not be oriented to time or place, and may produce what appear to healthcare professionals (HCPs) to be inaccurate, untrue or even bizarre statements. As part of a wider UK-based study identifying ways to avoid, de-escalate or resolve distress for PLWD in the acute hospital setting, and prompted by their co-occurrence with distress, we used conversation analysis to examine interactions involving these ‘reality disjunctures’ (Pollner, 1975). We analysed 53 HCP/PLWD interactions collected across four acute wards in two large teaching hospitals. We found that responses to reality disjunctures fell into four categories across a continuum: challenging the competing reality expressed by the PLWD; diverting the interaction to an alternative aspect of reality that could be shared; finding a commonality in the PLWD’s reality; and co-constructing the PLWD’s reality. Our findings show similarities with Lindholm’s (2015) analysis of ‘confabulation’ by a single PLWD in a day-care centre; however the range, distribution and detail of the practices differed in ways that reflected the contingencies of the acute care setting. Approaches in the middle of our continuum, which work to create some kind of shareable world or experience, are one way in which skilled staff support PLWD not only to manage distress, but also to maintain a social self rather than a subjective one. Identifying these approaches makes them available to others to improve patient care.