Finding Meaning in the Dementia Caregiving Relationship

Abstract

Caregivers of individuals with dementia describe a wide spectrum of caregiving experiences, ranging from very negative to very positive. Previous literature acknowledges these differing experiences, but how and why they differ has rarely been investigated. Dementia caregiving can be burdensome with many psychological, physical, social and financial challenges. However, it can also be an opportunity for growth and transcendence as caregivers find meaning in caregiving. High levels of mutuality (the perception that the quality of the care relationship is positive), reportedly ameliorates negative caregiver outcomes. Thus, this dissertation consists of three studies that explore aspects of the caregiver-care recipient relationship that may enhance positive caregiving experiences. The first study was a secondary analysis of factors related to caregivers' perceptions of care relationship mutuality over a 12 month period. Caregivers who reported high mutuality were less likely to be depressed and more likely to provide care for longer periods before deciding to institutionalize the care recipient. The second study was a secondary analysis of caregiver interviews. It revealed that caregivers who reported a positive caregiving experience described both their past and present relationship in loving terms and reported that they understood their care recipient could not reciprocate. These caregivers focused on aspects of the relationship that still existed, rather than on what they had lost. They expressed satisfaction with caregiving, were other-focused, and reported little caregiving burden. The third study was a qualitative descriptive study. Caregivers who reported finding meaning in caregiving were interviewed to explore how they were able to do so. These caregivers used strategies such as accepting the situation, deciding to care, choosing a positive attitude, focusing on the blessings of caregiving, and actively seeking care resources. They demonstrated altruistic values and the determination and discipline to live those values. They also possessed strong faith, love, and social support, and said they had derived strength from past challenges. Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in caregiver and care recipient outcomes. Caregiver interventions should include relationship-building skills and empathy building techniques to offset adverse caregiver outcomes and enhance understanding and acceptance of changes that occur in the care recipient over time.