Losing Selves: Dementia Care as Disruption and Transformation

Abstract

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.

Ambiguous gain: uncertain benefits of service use for dementia carers

“…While trades people, for example, may come and go, the nature of their intrusion is clear, and the timing and duration usually under the control of the resident. For dementia carers beleaguered by social stigma (MacRae 1999) and fractured life trajectories (Karner and Bobbitt‐Zeher 2006), the home can constitute a vital symbolic resource for sustaining a coherent, continuous and affirmed identity (Dupuis and Thorns 1998).…”

“…In order to restabilise their identities, carers strive to create new selves and relationships that are meaningful and affirming (Karner and Bobbitt‐Zeher 2006). Support from other carers and care workers can make a significant contribution to relieving identity stresses arising from relationship loss.…”

Nonbiologic Objects as Actors

“…It is at this point that others' perception of minded behavior on the part of the sufferer becomes almost impossible to achieve. Alzheimer's disease does not directly steal who a person is so much as it presents increasingly difficult obstacles for the collaborative process of bringing self into being through interaction (see Karner and Bobbit-Zeher 2005). A less drastic but still illustrative example is found in Wiley's (2003) description of how parents teach infants about the world and their place in it.…”

‘We needed to change the mission statement of the marriage’: biographical disruptions, appraisals and revisions among couples living with endometriosis

“…Exceptions include studies that explore motherhood and the mother–child dyad in relation to breast cancer (Fisher and O'Conner ); HIV infection and motherhood (Wilson ) and couplehood and first time motherhood (Sevón ). Some studies have specifically explored the biographical disruption experienced by the ‘well’ partner (Roberts and Clarke ) or spousal caregiver (Greenwood and Mackenzie , Hasselkus and Murray , Karner and Bobbitt‐Zeher ), or the ways in which biographical disruption and biographical continuity are experienced simultaneously by spousal carers (Adamson and Donavon ).…”