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Caring for a partner with dementia during the Covid-19 pandemic: Lived experiences of spouse carers Passed

Wednesday May 15, 2024 14:06 - 14:18 G1

Moderator: Cornelia Van Diepen
Presenter: Marcus Falk Johansson

Track: Informal Care and Support

Background: While the challenges faced by healthcare professionals on the front lines of the COVID-19 pandemic are well-documented, less is known about its impact on informal carers. This study aims to describe the experiences of spouses of persons with dementia (PWD) living with and caring for their partners during the COVID-19 pandemic. Method: A phenomenological approach based on 24 phone interviews with spouses of community-dwelling persons with dementia. Result: The overarching patterns of the phenomenon revealed diverse experiences of fear related to COVID-19 and recommendations on social distancing. There was a difference between those perceiving their lives as relatively unchanged and those experiencing considerable change. Among those who experienced less change due to the pandemic, some were already in relative isolation because of their partner's dementia, while others were able to adapt to social distancing recommendations. While there was a distinction between those fearing COVID-19 and those who didn’t, the capacity to adapt to the situation varied. Those caring for partners with extensive care needs and relying on home care were disproportionately affected by the lack of services. The experience of health and well-being also varied when the opportunity for recuperation diminished. Nonetheless, there are numerous accounts of health maintenance. This was attributed to increased access to rehabilitative measures for those who weren't afraid of COVID-19 and thus didn't hesitate to seek assistance. Following constituents emerged: Contrasting experiences of health, Living in fear, Healthcare as a vector of infection, Consequences of insufficient support, Existential distress of carer burden, Balancing loneliness with COVID-safe socialization. Conclusion: These findings emphasize the complexity of the pandemic's impact on persons with dementia (PWD) and their spouse carers. They underscore the necessity of understanding: resilience and adaptation, service accessibility, health and well-being maintenance, and the overall importance of tailored support and person-centered interventions. 

Language

English

Seminar type

Pre-recorded + On-site

Lecture type

Orals

Conference

GCPCC

Authors

Marcus Falk Johansson, Lena Marmstål Hammar, Martina Summer Meranius

Lecturers

Profile image for Cornelia Van Diepen

Cornelia Van Diepen Moderator

Assistant Professor
Erasmus University Rotterdam

I am a social medical researcher at the Erasmus School of Healthcare Policy and Management (ESHPM) working together with the GU in the PCC@work project.
My research focuses on the impact of PCC on healthcare professionals and many other topics including women's health, internet research, and international collaboration on nutrition.

Profile image for Marcus Falk Johansson

Marcus Falk Johansson Presenter

PhD, Lecturer in Social Work
Dalarna University

PhD in Care Sciences, MA-SW, BSc-SW, Social worker