Speaking for and about a spouse with dementia: A matter of inclusion or exclusion?

Abstract

This study analyses sequences where people with dementia are positioned as third parties in stories about their own lives. Previous research emphasises how people with dementia are frequently excluded from social encounters, and how others tend to speak for or about them in their co-presence. Drawing on conversation analytic methods when analysing 15 video recorded interviews with Swedish couples living with dementia, we argue that telling stories in which a spouse with dementia is positioned as a third party in his or her co-presence does not have to be an activity of exclusion. Rather, among couples, third-party positioning is a multifaceted activity where couples employ different practices to organise participation frameworks and manage both inclusion and exclusion in talk-in-interaction. Furthermore, we show how participants display joint speakership and counteract actions of exclusion by making use of various communicative resources such as gaze, touch and bodily orientation.

A qualitative systematic review of experiences of persons with dementia regarding transition to long-term care

“…Chatterji's (1998) account reveals contrasting perspectives about the process of Mr. Rijder's transition to the verpleeghuis, specifically as they 'played out' through conversation. From speech-language pathology and audiology perspectives (the authors' disciplinary perspectives), it is imperative that future research explores how dementia-related interactional changes (Kindell, Keady, Sage, & Wilkinson, 2017;Nilsson, Ekstr€ om, & Majlesi, 2018) shape the shared transition experiences of persons living with dementia and their families. Future intervention research should continue to explore the: means for supported/shared decision-making with persons living with dementia, ways to improve LTC facility practices for admissions of persons living with dementia and ways to support new and existing social connections in the LTC setting.…”

Companions' dilemma of intervention when they mediate between patients with intellectual disabilities and health staff

“…The situation of a person with an intellectual disability is the same as the child, or any other person: whether or not they actually know the answer to the medical practitioner's question, they can be treated as having it, or not. How the companion brings this off -whether they manage what Nilsson et al (2018), in studying companions helping a person with dementia tell a story, call "joint speakership", or whether they merely take over, as Tates et al (2002) suggest, is a matter of discovery, and the key to it is the degree of epistemic authority the companion is willing to display.…”

Couples living with dementia managing conflicting knowledge claims

“…Especially relevant for the current study, Hamilton (2019: 75) notes that in conversations with a third party, partners will sometimes contradict the PWD and speak on their behalf, thereby intruding on the PWDs’ ‘information preserve’ (see also Williams et al, 2020). Also Nilsson et al (2018) have argued that it is common in interactions involving couples living with dementia that the PWD relies on and invite their partner to speak on their behalf, possibly prioritizing progressivity over epistemic rights. The social sensitivity of not knowing has also been explored.…”