Making sense of dementia: Exploring the use of the Markers of Assimilation of Problematic Experiences in Dementia scale to understand how couples process a diagnosis of dementia

Abstract

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Living well with dementia groups: changes in participant and therapist verbal behaviour

“…Amongst other findings, these studies have described the importance of disclosures of shame within a group (Watkins, Cheston, Jones, & Gilliard, 2006), the reciprocal turntaking discourse of couples (Snow, Cheston, & Smart, 2015) and the use of metaphors or stories as indirect explorations of threat (Cheston, Jones, & Gilliard, 2004). More recently, Cheston (2016) has described how a fear of loss of internal control may act to prevent people with dementia from being able to articulate especially problematic or threatening aspects of their dementia.…”

Markers of assimilation of problematic experiences in dementia within the LivDem project

“…This way of representing the threat of dementia, and thus the nature of the psychological change that is required for people to "come to terms with" dementia, has been used in a series of studies about changes in descriptions of dementia (e.g. Snow, Cheston and Smart, 2014;Cheston, 2013;Betts and Cheston, 2012;Simms and McCrum, 2012;Watkins et al, 2006;Cheston, Jones and Gilliard, 2004). The Markers of Assimilation of Problematic Voices Scale (MAPVS) was adapted so that it is appropriate for use with people with dementia (Lishman, Cheston and Smithson, 2014).…”

“…To name dementia, then, is to acknowledge its existence and thus to risk a loss of emotional equilibrium. Thus Sue's description of her dementia as "like being given a ticking time bomb" (Snow, Cheston and Smart, 2014) and Henry's analogy of fighting an unnamed foe because he did not want to "wave the white flag" (Lishman, Cheston and Smithson, 2014) were both rated being markers of a "fear-of-loss-of-internalcontrol" -and thus acquired a Level 1 rating. Finding alternative ways to talk about dementia, for instance by using euphemisms (such as memory loss) or figurative language is therefore part of a process of emotional regulation.…”

“…Within this framework, a diagnosis is likely to represent such a powerful threat to the person’s psychological equilibrium that it may resist being easily assimilated into the self. This way of representing the threat of dementia, and thus the nature of the psychological change that is required for people to “come to terms with” dementia, has been used in a series of studies about changes in descriptions of dementia (e.g., Betts & Cheston, 2011; Cheston, 2013; Cheston, Jones, & Gilliard, 2004; Snow, Cheston, & Smart, 2014; Sims & McCrum, 2012; Watkins et al., 2006). The MAPVS was adapted so that it is appropriate for use with people with dementia (Lishman, Cheston, & Smithson, 2014).…”

Experiences of shame for people with dementia: An Interpretative Phenomenological Analysis

“…Cheston (2015) suggests that fears of losing control or losing one’s self are central to the experience of shame in dementia. Extracts from interviews and therapeutic groups (Snow, Cheston, & Smart, 2015; Watkins, Cheston, Jones, & Gilliard, 2006) provide examples of participants’ fears of ‘going mad’, ‘ceasing to be’, and becoming ‘just a function’ (Cheston, 2015, p. 13). Lishman, Cheston, and Smithson (2014) illustrate how symptoms of dementia can cause shame, making people feel different, afraid of being judged and influencing withdrawal: ‘I forget something silly, that I should have known, it’s embarrassing…’ (p. 55); ‘That’s quite upsetting when you’re trying to think of something and it’s not there anymore… because you can’t think of the words to say so you withdraw’ (p. 64).…”