Subjective responses to caregiving for a spouse with dementia

Family members, typically spouses, serve as the primary caregivers for individuals with dementia. While it is recognized that caregivers experience both positive and negative subjective responses to caregiving, relatively little research has been done on the relationship between these types of responses. The objectives of the study were to examine the relationships between and among spouse caregivers' positive and negative subjective responses to caregiving, and increase understanding of the experience of being a spouse caregiver for a person with dementia. Fifty spouse caregivers completed quantitative measures of positive subjective responses (Positive Aspects of Caregiving and Caregiver Competence) and negative subjective responses (Relational Deprivation, Role Captivity, and Loss of Self). Additionally, participants were interviewed concerning their caregiving experiences. Positive Aspects of Caregiving and Caregiving Competence were significantly related to each other (p < .01), as were the three measures of negative subjective responses (p < .01). No significant correlations were found between any measures of a positive and a negative subjective response, suggesting the two types of responses are independent. Duration of caregiving was significantly related to Positive Aspects of Caregiving (p < .05), Caregiver Competence (p < .05), and Relational Deprivation (p < .01). Qualitative interview data revealed that participants simultaneously experienced caregiving as self-affirming, while also enduring losses and difficulties resulting from their caregiving role. Integrating the positive and negative aspects of the whole of caregiving is important to understand the caregiving experience and to design interventions to support caregivers.