Measurement and the interpretation of burden in the Alzheimer's disease experience

Gubrium, Jaber F.; Lynott, Robert J.

doi:10.1016/0890-4065(87)90018-1

Cited by 37 publications

(17 citation statements)

References 23 publications

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“…This suggested that, once the label Alzheimer's was applied, even normal behavior may be interpreted in terms of disease stages (Gubrium & Lynott, 1987;Lyman, 1988Lyman, , 1989.…”

Section: Discussionmentioning

confidence: 98%

Framing spaces in places: Creating “respite spaces” in dementia care settings

Harnett

2013

Dementia

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Research on dementia care settings has primarily focused on routine aspects of life, including mealtimes, bathing procedures, etc. However, studies rarely explore how individuals with dementia interact in these settings during the intervals between routines. This study aimed to analyze how residents actively carved out spaces that provided temporary respite from institutional life, termed ''framing respite spaces.'' Ethnographic data was collected over five months in a dementia care setting in Sweden. Frame analysis was employed to investigate residents' shared understanding of non-task-orientated situations. The results showed that individuals with dementia adjusted to institutional order, but also actively created respite spaces through conversation. Interestingly, individuals with dementia interpreted conversational cues and often acted logically according to a shared definition of the specific situation. These findings showed that looking beyond task-orientated interactions between staff and residents can provide a more detailed picture of everyday life in dementia care settings.

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“…This suggested that, once the label Alzheimer's was applied, even normal behavior may be interpreted in terms of disease stages (Gubrium & Lynott, 1987;Lyman, 1988Lyman, , 1989.…”

Section: Discussionmentioning

confidence: 98%

Framing spaces in places: Creating “respite spaces” in dementia care settings

Harnett

2013

Dementia

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“…Gubrium (1986) makes this distinction in his discussion of “disease‐for‐the‐physician” and “disease‐for‐the‐caregiver.” As he suggests, each definition reflects the definer's interest in making sense of the illness within his or her own knowledge base, discourse, and agenda. Thus disease is both detected as well as constructed through medical assessments and, once diagnosed, all behaviors and symptoms are understood through the medical label of dementia (Gubrium and Lynott 1987). Once “symptoms” are medicalized, medical interventions (restraints, pharmacology) can be legitimately employed (Lyman 1999).…”

Section: Illness Self and Familymentioning

confidence: 99%

Losing Selves: Dementia Care as Disruption and Transformation

Karner

Bobbitt‐Zeher

2005

Symbolic Interaction

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Caregiving is a process of transformed identities and reconstructed relations. The disruption of Alzheimer's disease affects both the individual with dementia and the person providing care. One becomes enselfed in dementia, the other transformed into a caregiver. Using data from twenty qualitative interviews with family caregivers, this article traces the transformative process by which the previous relational selves of both participants become casualties of the disease. Findings suggest that the ill person in this dyad is silenced through dementia, leaving the caregiver narratives to become the morality tales of transformation from disorder to order, from havoc to meaningful interaction. By becoming caregivers, family members construct value in their struggles to negotiate the disorder of illness and recreate meaningful and affirming selves and relationships.

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“…Prior research indicates that formal caregivers do not typically engage in the subtle work of helping individuals find clarity during bouts of heightened confusion, relying on what some describe as harmful shortcuts in behavioral interpretation instead (see Dupuis et al, 2012; Downs et al, 2006; Lyman, 1988; Gubrium & Lynott, 1987). Downs et al (2006), for instance, introduce the concept of ‘diagnostic overshadowing’ to describe the practice in which care staff members tend to see the entirety of the affected individual’s behavior as “attributed to the labeled condition” (240).…”

Section: Discussionmentioning

confidence: 99%

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

Berry

2014

Journal of Aging Studies

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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.

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Measurement and the interpretation of burden in the Alzheimer's disease experience

Cited by 37 publications

References 23 publications

Framing spaces in places: Creating “respite spaces” in dementia care settings

Framing spaces in places: Creating “respite spaces” in dementia care settings

Losing Selves: Dementia Care as Disruption and Transformation

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

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