The ‘One Way Journey’: How men experience, navigate, and conceptualize the process of being a caregiver for their wives who have dementia

Abstract

Background: The health care system relies heavily on unpaid caregivers, or family, for people living with dementia. As demographics and gender norms shift, more older men will be providing care than ever before. Caring for someone with dementia within the home comes with challenges and health impacts (including stress, depression, sleep difficulties, and anxiety) and the needs of the caregiver are easily hidden. Specifically, research on men is limited to small, homogenized samples resulting in an oversimplification of their experiences and limits the understanding of a broad range of experiences. Research Question: What are the experiences of husbands who care for their wives with dementia? Method: Using a constructivist grounded theory approach, this research explores the experience of caregiving for husbands when their wife has dementia. Semi-structured interviews were conducted with 11 men aged 61-88 who have a wife with dementia. Interviews were transcribed and analyzed using the constant comparative method through an iterative approach. The method was not used to develop a theory; rather, the systematic process grounded in the data provides a robust analysis of their experiences. Findings: Three major themes were identified from the study; Becoming a Caregiver; Navigating and Managing Changes in Relationship; and Organizing, Planning, and Re-evaluating the Future. Becoming a Caregiver involved learning to be a caregiver, what it means to be a caregiver, and experiencing changes in self. Navigating and Managing Changes in Relationship involved navigating loss and grief; managing and avoiding conflict; and maintaining intimacy. Organizing, Planning and Re-evaluating the future involved and planning and making the decision for long-term care; reconceptualizing values, and meaningful gender-specific supports. Men navigated and negotiated their sense of self. Their experiences impacted their view of themselves and compelled an evaluation of their values. Within all aspects of this journey was a negotiation of what it means to be a man in a caring role, with masculinity presenting as a dynamic process. Discussion: This thesis identified practical and conceptual components to the caregiving experience for husbands; 1) How men provide and conceive care, 2) How men construct their sense of self and their relationship, 3) How they navigated and managed their evolving relationship, and 4) What men find supportive as a caregiver. Men in this study perceived caregiving as both physical and emotional which can limit their self-identification as a caregiver if men did not provide personal care. Men navigated their circumstance and their changing reality by actively re-constructing their sense of self and their marital relationship. Men in this study found supports that are specific to them, that are not centralized on caregiving, and that utilize purposeful recruitment to be the most effective strategy to engage them. Conclusion: The experience of husbands caring for a wife with dementia is complex. This thesis identifies both practical and conceptional elements and provides new insight into the complex and dynamic nature of being a caregiver as a man. More research is needed to further understand the variance in experiences.