Title

The Family With Dementia: Shifting Identities in Everyday Lives

Presenter Information

Betty R. Hasselkus
Bridget Murray

Start Time

7-10-2006 10:15 AM

End Time

7-10-2006 12:00 PM

Abstract

The majority of care for people with Alzheimer’s disease and related dementias is carried out in the community by family and friends (National Academy of an Aging Society, 2000). The purpose of this study was to gain understanding of the nature of caregivers’ experiences of identity in families with dementia within a context of everyday occupation. Burke (1980) defined identity as relational and social, and Christiansen (1999) proposed theoretical links between occupation and identity. The bulk of identity research in dementia care has focused on the person with dementia, not on the person providing care within a family. In one exception, Orono (1990) concluded that caregivers in her study “lost remnants of their own identity” over time. In this study, we broaden the study of identity beyond the individual self to the concept of shared family identities in the context of caregiver – care receiver occupational experiences. Phenomenological telephone interviews (Van Manen, 1990) were conducted with 33 family caregivers, asking each respondent to describe a very satisfying and a very dissatisfying experience of care giving. Follow-up call-back interviews were conducted with 8 of the respondents. We used a narrative analytic approach to identify experiences of everyday occupation in the data followed by thematic analysis and synthesis (Mattingly, 1998). The analysis yielded understandings of everyday occupation as a phenomenon through which challenges to the caregiver’s well being, shared identities, and biographical continuity were revealed and from which strategies to meet these challenges were generated. These understandings help occupational therapists assist family caregivers to tailor their everyday occupation both to retain a sense of continuity in their family identities and to construct new identity parameters. Discussion accompanying this paper will likely revolve around shared identity, family identity, and individual identity as concepts, their relationships to everyday occupation, the unique identity concerns of the dementia care giving family context, and implications for practice in community and institutional settings. I will also encourage audience critique regarding the strengths and weaknesses of the research design.

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Oct 7th, 10:15 AM Oct 7th, 12:00 PM

The Family With Dementia: Shifting Identities in Everyday Lives

The majority of care for people with Alzheimer’s disease and related dementias is carried out in the community by family and friends (National Academy of an Aging Society, 2000). The purpose of this study was to gain understanding of the nature of caregivers’ experiences of identity in families with dementia within a context of everyday occupation. Burke (1980) defined identity as relational and social, and Christiansen (1999) proposed theoretical links between occupation and identity. The bulk of identity research in dementia care has focused on the person with dementia, not on the person providing care within a family. In one exception, Orono (1990) concluded that caregivers in her study “lost remnants of their own identity” over time. In this study, we broaden the study of identity beyond the individual self to the concept of shared family identities in the context of caregiver – care receiver occupational experiences. Phenomenological telephone interviews (Van Manen, 1990) were conducted with 33 family caregivers, asking each respondent to describe a very satisfying and a very dissatisfying experience of care giving. Follow-up call-back interviews were conducted with 8 of the respondents. We used a narrative analytic approach to identify experiences of everyday occupation in the data followed by thematic analysis and synthesis (Mattingly, 1998). The analysis yielded understandings of everyday occupation as a phenomenon through which challenges to the caregiver’s well being, shared identities, and biographical continuity were revealed and from which strategies to meet these challenges were generated. These understandings help occupational therapists assist family caregivers to tailor their everyday occupation both to retain a sense of continuity in their family identities and to construct new identity parameters. Discussion accompanying this paper will likely revolve around shared identity, family identity, and individual identity as concepts, their relationships to everyday occupation, the unique identity concerns of the dementia care giving family context, and implications for practice in community and institutional settings. I will also encourage audience critique regarding the strengths and weaknesses of the research design.