Maintaining or letting go of couplehood : Perspectives of older male spousal dementia caregivers

• Published in: Scandinavian Journal of Caring Sciences
• Main Authors: Stefánsdóttir, Olga Ásrún, Munkejord, Mai Camilla, Sveinbjarnardóttir, Eydís Kristín
• Other Authors: Faculty of Nursing and Midwifery, University of Akureyri
• Format: Article in Journal/Newspaper
• Language: English
• Published: 2021
• Subjects: Makar; Heilabilun; Umönnun; couplehood; dementia; grounded theory; older male spousal caregivers; phases; relationship; Public Health; Environmental and Occupational Health; Akureyri; Bergen; Norway; Iceland; University of Akureyri
• Online Access: https://hdl.handle.net/20.500.11815/2769; https://doi.org/10.1111/scs.13035

No funding was obtained for this study. Primarily own research time financed by the University of Akureyri (Olga and Eydis) and Western Norway University of Applied Sciences, Bergen (Mai). Funding for travel expenses related to fieldwork and analysis workshop: grant from the University of Akureyri and some funding from the project Ageing at home (grant number 257019, RFF Nord) Publisher Copyright: © 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science Despite the negative implications for their own health, spouses continue to support each other and maintain their couplehood for as long as possible, including when one of them develops a severe illness. However, with some exceptions, the experiences of older male spousal caregivers have been largely overlooked, and our knowledge of the relational aspects of spousal dementia care is scarce. To respond to this knowledge gap, this article explores the following research questions: How do older male spousal caregivers of wives with dementia talk about changes in their couplehood? What transitions or phases in the relationship can be identified as the caring process evolves and the wife's health continues to deteriorate? To answer these questions, we analyse in-depth interviews with eight purposefully selected men aged 67–92 years old from Iceland and Norway. Our findings reveal that the participants felt that they were gradually losing their couplehood in the sense that they lost their shared everyday life routines, intimacy, joint activities, meaningful communication, and dreams and hopes for the future. Four phases of the dementia caring process were identified: the denial phase, the battle phase, the new reality phase and the redefinition phase. We hope that our findings spur more research on relational challenges as experienced by spouses caring for partners with cognitive decline. In conclusion, we argue that interdisciplinary clinical guidelines for a couple-centred ...