Living and loving with dementia: Negotiating spousal and caregiver identity through narrative

Abstract

In this paper, we examine how Alzheimer's disease and related disorders (ADRD) affect caregivers' perceptions of change in the identity of their afflicted spouse and the ways in which accompanying changes in caregiver identity influence intimate relations. We also explore how gender shapes the ADRD caregiving experience among married couples, specifically, the extent to which intimate relations are also gendered relations. The study group was comprised of spousal caregivers recruited from support groups in the two Midwestern states and from the Alzheimer's Disease Center (ADC) at a large Midwestern university hospital. In-depth interviews were conducted with 13 men and 15 women whose spouses had ADRD. The intensive interviews confirmed that identity change on the part of sick spouses had important implications for intimacy, although not always in adverse ways. The majority of caregiver husbands and wives reported diminished intimacy as a result of the ADRD. Many men and women believed they would retain feelings of closeness to their afflicted spouses as long as they were alive. Wives were more likely than husbands to report that changes in their spouses' identity altered how they identified themselves within their marriage. This has important implications for intimate relations between people with ADRD and those who care for them. Our findings suggest that caregiving and intimacy are very different experiences for men and women, and point to the need for caregiver education and support.