Relative Hope, Relative Care: Parkinson’s Disease Family Carers on Hope and Evolving Care

Abstract

Parkinson’s disease (PD) profoundly impacts the everyday lives and relationships of those affected. This is especially the case when the caregiver is a family member of the person with PD. With disease progression, caregiving needs increase, prompting its description as a family disease. While caregiving is frequently viewed as burdensome, the role of hope remains underexplored. Hope is vital in serious illness; understanding carers’ hope across PD stages is essential. Drawing on ethnographic fieldwork in Danish PD support groups and interviews with 15 relatives, we explore the everyday life of PD relatives, sources of hope, and nuances of care across disease stages. We introduce the notion “evolving care” to illustrate how caregiving tasks, roles, and emotions change over time, requiring ongoing adaptation. Hope, too, was dynamic, assuming multiple forms. Psychotic episodes and dementia marked critical tipping points, where hope faltered and care became precarious. Our findings underscore how hope, deeply rooted in social relationships, offers vital strength but can become fragile when caregiving demands intensify. Furthermore, we show how an attention to hope may reveal to professionals specific situations where help is needed.

Keywords
hope, care, caregiving, Parkinson’s disease