Sustaining relational subjectivity: The experience of women with dementia

Abstract

The experience of dementia can only be understood adequately if the influence of gender is fully recognised. Research accounts have, however, tended to portray dementia in gender-neutral terms. This qualitative research study aims to redress this imbalance by investigating the gendered experience of women with dementia. The research addressed women’s negotiation of relationships with spousal partners, other family members, professionals, support groups and services. The study included 10 mixed-sex spousal couples in which the woman had been diagnosed with dementia. Women took part in semi-structured joint interviews alongside their partners. This research focuses on the responses provided by the women with dementia within these interviews. Four principal themes were identified within the data: upholding gendered subjectivities; the broader relational context; closer networks; and gendered care relationships. These themes elucidate the challenges women face in sustaining relational subjectivity via the spousal relationship and wider social associations while also dealing with the cognitive impacts of dementia. The article concludes by highlighting that a more nuanced social scientific perspective on dementia is required that acknowledges the complexity of gendered experience. This can assist policymakers and practitioners to tailor support to meet the requirements of women with dementia.