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 caring 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 analysis of wives’ and men’s stories was applied, especially focusing on a wife’s story, to examine the detailed interrelationships between life situation, caring demands, experiences, and reactions. Spousal care is influenced by gendered caring norms and roles. The study finds marked differences between wives and husbands in the meaning, content and sustainability 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 person-centered support to live their own lives and preserve their selves.