Two sides of the same coin? Revisiting the relationship between burden and positive aspects of caregiving in dementia.

Abstract

Studies have shown that items on the Zarit Burden Interview (ZBI) purported to measure self-criticism do not correlate well with the other items. Examination of item content suggests they may be measuring mixed sentiments-both positive and negative-about caregiving. This study examined whether self-criticism is related to positive aspects of caregiving (PAC) in a way that is different from caregiver strain, and if so, which types of PAC. The baseline data of two Alzheimer caregiver intervention studies were merged (N=225). Based on previous factor analysis, 2 ZBI items formed the self-criticism measure while 16 ZBI items measured global strain. PAC was assessed by coding caregivers' narratives about positive gains into seven themes (relationship gains, growth, insights, competence/mastery, purpose, emotional rewards, and miscellaneous). Global strain was mildly associated with fewer total PAC, in a way consistent with the literature, and with less competence/mastery. However, self-criticism was associated with stronger relationship gains and purpose. Younger caregivers reported more relationship gains but less emotional rewards. Longer caregiving duration was associated with more growth, but the reverse was true for chronic illnesses. Additionally, relationship closeness was associated with more emotional rewards, whereas care-recipient neuropsychiatric symptoms and functional impairment were associated with fewer relationship gains and emotional rewards respectively. Thinking one is not doing enough may indicate feelings of inadequacy/guilt but may also signal devotion to the relative and a sense of purpose in the caregiving role. Analyzing total burden and PAC scores may obscure the relationships between their components.