Spousal identity stage theory in dementia caregiving: A bittersweet journey

Abstract

This qualitative study into the identity issues facing spousal caregivers of persons with a perceived cognitive deficit, grew out of the studies conducted by Farberman, Finch, Horowitz, & Lurie (2001) and Farberman, Finch, Lurie, & Morgan (2003). These two studies showed that the period of peak burden for caregivers occurred during the middle stages of caregiving, when there was a shift from Instrumental Activities of Daily Living (IADL) support to Activities of Daily Living (ADL) support. The increased burden was greatest for spousal caregivers of those with dementia. The question is why? Although much research has been done on the general subject of burden, this study approaches the issue of burden with the lens of spousal social identity.

Using grounded theory methods, 40 spousal caregivers were interviewed, the majority of whom were white females (although 11 were male, and 3 were non-white). A purposive sampling technique was used and recruitment of respondents took place at Alzheimer's support groups, adult day care centers, and other relevant sources. The interview guide evolved as new information emerged, with interviews averaging 1 ½ hours.

The results showed a distinct change in the caregivers' perceptions of their own identities, as well as their care receivers' identities. This change often occurred simultaneous with a specific event that dramatized the care receivers' lack of mastery with resulting increased dependency. The conceptualization of the couple's identity, as a symbiotic pair, borrowing the direct meaning of the metaphor of symbiosis from biology, is central to the findings. The data from the interviews pushed in the direction of a stage theory, and indeed all of the caregiving couples, with one exception, were moving through the proposed stages, based on types of symbiosis.

The grounded theory arising from this research points out that the spousal relationship intensifies during the caregiving experience, thus clarifying why spousal caregivers often become overwhelmed by various sources of stress, and when intervening mediators should be attempted in order to support both care receiver and caregiver.