Dealing with Dementia
Plenty of Information, but Nobody Did Anything Practical! : The Lived Experience of a Dementia Diagnosis
Paper Presentation in a Themed Session Lynn Sudbury-Riley, Philippa Hunter Jones
Dementia is a progressive and debilitating condition. Estimates suggest that globally, 55 million people live with dementia. Population aging means these figures are set to rise significantly. This research examines the lived experiences of those living with dementia and their family carers. We conducted this study in collaboration with a UK hospice offering a course for carers. We asked people to tell their stories from pre-diagnosis to the present day. The final sample (n =33) comprises 5 people with dementia, while the rest are family carers. We uncovered a journey beset by delays, access barriers, power struggles, and fear. Early delays stemmed from reluctance, of patients and their families, to admit to a problem and seek help. Complaints that medical professionals failed to listen to family members led to perceptions of a power imbalance between provider and service user. In turn, this led to diagnosis delays, and feelings of frustration and vulnerability among carers as they struggled alone. Post-diagnosis, feelings of isolation and fear arose partly from contemplation of new role expectations (or demands), and partly from the complexity of the service system they needed to access. Surprise and relief were typical of experiences when people did access the hospice for the carer’s course. Peer support emerged as a key benefit of the course, helping to mitigate experiences of isolation. Nevertheless, overall, we identified major gaps in service provision, both for the people with dementia themselves and a desperate need for support and respite for isolated and exhausted caregivers.
Dementia Care and the Polycrisis: Comparative Perspectives from Germany and Scotland
Paper Presentation in a Themed Session Anna Eva Nebowsky
The increasing prevalence of dementia presents significant challenges for aging societies, particularly within the broader context of the ‘polycrisis’, where demographic change intersects with social, economic, and care system transformations. This study explores how different care models in Germany and Scotland shape the lived experiences of people with dementia and their caregivers. Drawing on an ethics of care perspective and secondary qualitative data from two research projects, we examine the impact of informal family care, live-in migrant care, and residential care settings on autonomy, identity, and intergenerational relationships. Our findings highlight how the structures of national care systems—Scotland’s reliance on informal family care with some limited formal support versus Germany’s increasing use of live-in migrant carers, alongside the continuing existence of residential care homes in both countries —affect both the well-being of people with dementia and the ethical tensions within caregiving relationships. While policies in both countries emphasize ‘aging in place’, practical barriers such as financial constraints, workforce shortages, and legal uncertainties in migrant live-in care arrangements challenge the realization of this goal. Moreover, the narratives of people with dementia reveal experiences of both agency and marginalization, underscoring the need for person-centered approaches that account for emotional, social, and policy dimensions of care. By situating dementia care within the broader dynamics of the polycrisis, this study contributes to a deeper understanding of how demographic aging interacts with structural care challenges, offering insights for more sustainable and ethically informed care policies.