This thesis examines the implications of age relations for older people’s negotiations of formal home care, family/friend caregiving, and self-care. Age relations constitute social processes, cultural discourses, and everyday practices that produce and sustain relations of inequality between and among people of different ages. Despite the overwhelming focus on care in the sociology of aging and in political discussions of aging societies, scholars have not clearly articulated how age relations shape, and are shaped by, experiences of later life care. Moreover, despite evidence that older people receive care from both formal care providers and family/friend caregivers—and that they continue to practise self-care when they receive care from others—we know little about the ways older care recipients negotiate the intersections that exist between these systems of care. Using data from a grounded theory study that involved qualitative interviews with 34 people aged 65 to 100 receiving home care in Ontario, this thesis considers how older people negotiate the intersections of formal home care, family/friend caregiving, and self-care, and how age relations can be used to understand experiences of later life care. Findings suggest that older care recipients attempt to strike a balance between self-care, formal home care, and family/friend caregiving, to access care that reflects their needs, preferences, and timelines. In doing so, they negotiate the tensions and contradictions that exist between the realities of impairment, illness, and care needs in later life; and the desire to remain self-sufficient and avoid “burdening” others with care needs. These findings provide insight into the everyday practices through which older people construct age relations in the context of care: when participants negotiate care arrangements, I suggest that they both reproduce and challenge the social processes and cultural discourses that are at the basis of age relations. Access to social and/or financial resources, however, had consequences for participants’ negotiations of care and of age relations. / Thesis / Doctor of Philosophy (PhD)

In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. / Dissertation / Candidate in Philosophy / This dissertation explores the lived experiences of young adult caregivers (YACs) caring for an older adult with Alzheimer’s Disease or a Related Dementia. Research on this group of caregivers is limited, particularly YACs (ages 18-25) who provide substantial (unpaid) caregiving for an older adult affected by Alzheimer’s or a Related Dementia. Therefore, a key aim of this research is to generate awareness and shed light on the nature of caregiving as experienced by this overlooked population of caregivers. As such, this dissertation aims to understand how young caregivers give meaning to, interpret and make sense of their caregiving experience. To understand the caregiving experience of YACs, I conducted interviews with 12 YACs from Canada and the United States and analyzed their perspectives in detail. The findings shed light on the many factors that shape the caregiving experiences. In addition, the findings show that more research is needed to understand the differences amongst young caregivers to better support their needs. In general, the research can contribute to existing knowledge on young adult caregivers, as well as relevant programs and policies.