Minimizing confusion and disorientation: Cognitive support work in informal dementia caregiving

Abstract

Drawing from ethnographic fieldwork and in-depth interviews, I explain how informal dementia caregivers attempt to reduce the affected individual’s moments of confusion and disorientation through cognitive support work. I identify three stages through which such support takes shape and then gradually declines in usage. In a first stage, family members collaborate with affected individuals to first identify and then to avoid “triggers” that elicit sudden bouts of confusion. In a second stage, caregivers lose the effective collaboration of the affected individual and begin unilateral attempts to minimize confused states through pre-emptive conversational techniques, third-party interactional support, and social-environment shifts. In a third stage, caregivers learn that the affected individual has reached a level of impairment that does not respond well to efforts at reduction and begin abandoning strategies. I identify the motivations driving cognitive support work and discuss the role of lay health knowledge in dementia caregiving. I conclude by considering the utility of cognitive support as a concept within dementia caregiving.

How family members manage risk around functional decline: The autonomy management process in households facing dementia

“…Linking identity to activity participation, a number of studies, for instance, tie the effort of promoting autonomy to the concern with preserving or protecting the individual’s identity (Berry, 2014; Blum, 1991; Clare, 2002; Fontana & Smith, 1989; Perry & O’Connor, 2002; Phinney, 2006; Phinney, Chaudhury, & O'Connor, 2007). Perry and O’Connor (2002), for instance, describe how caregivers decrease the complexity of the elder’s old activities so that they may still engage in them to some extent and preserve a sense of self identity.…”

“…Relevant to the current study, she highlights how family members “struggled” to find the balance between constructively helping and “taking over in an undermining way” (143). Finally, the current piece also builds on work explaining how family members engage in “cognitive support work” in order to minimize confusion and disorientation in the elder’s social interactions (Berry, 2014). This piece identifies the lay health practices that family members develop to minimize the effects of symptoms on everyday life.…”

The potential role of relatives in designing person-centred assistive technologies (innovative practice)

“…As her cognitive impairment became progressively more pronounced, for example as reflected by serial Mini Mental State Examination (Folstein, Folstein, & McHugh, 1975) scores of 28/30 after 1 year, 24/30 after 2 years and varying between 17 and 14 out of 30 at 5½ years in her clinical notes, the earlier effectiveness of the modified clock significantly reduced. Berry (2014) described three stages of carer support when providing strategies intended to reduce confusion in persons with dementia. These were an initial collaboration between the person and his or her family, followed by unilateral carer input, and finally carers having to face the loss of efficacy of the strategies or technology as the person’s condition progresses (Berry, 2014).…”

“…Berry (2014) described three stages of carer support when providing strategies intended to reduce confusion in persons with dementia. These were an initial collaboration between the person and his or her family, followed by unilateral carer input, and finally carers having to face the loss of efficacy of the strategies or technology as the person’s condition progresses (Berry, 2014).…”

Self-reported confusion is related to global and regional β-amyloid: data from the Women’s healthy ageing project

“…Investigators identified early stage "confusional states" described by both care-givers and patients themselves are characterised by disorientation, failure of memory (e.g. unable to place people), incompetence and anxiety around decision making and wordfinding difficulties (Berry, 2014). Despite the lack of a strong definition, there is extensive research and published case-studies on this common presenting complaint.…”