How gender matters in demanding caring for a spouse with young-onset dementia: A narrative study

Abstract

Background: The gendered aspects of extraordinary demanding spousal car- ing for people with young-onset dementia have been scarcely researched. Aim: To analyze spouses’ experiences of the meaning, content, and effort of intensive caring for spouses/partners with young-onset frontotemporal dementia (YO-FTD), concentrating on a female perspective. Method: A qualitative Norwegian study using narrative interviews with 10 wives and 6 husbands were conducted in 2014 and 2015. Findings: The analysis resulted in four gendered main themes: Different caregiving periods, Distancing: experiencing a transformed spouse and relationship, Social isolation, and Needing assistance and relief. A case ana- lysis of wives’ and men’s stories was applied, especially focusing on a wife’s story, to examine the detailed interrelationships between life situ- ation, caring demands, experiences, and reactions. Spousal care is influ- enced by gendered caring norms and roles. The study finds marked differences between wives and husbands in the meaning, content and sus- tainability of care, and needs for support vary. Wives endured more stress longer than husbands, with a greater emotional impact and negative health consequences, and their needs are more easily neglected. Husbands presented their needs more efficiently and obtained public relief earlier. Conclusion: Women may need more support earlier during different stages of caring for a spouse with YO-FTD. They need gender sensitive per- son-centered support to live their own lives and preserve their selves.