Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research

Abstract

What is known about this topic• Gender is a neglected dimension in public discourse about dementia.• Gender is a key factor structuring the lives of those living with dementia.• There are gender differences in the care-giving experience. What this paper adds• A critical review of the research literature on gender differences in dementia care from a feminist citizenship perspective.• Insights into the gaps in the research literature.• Recommendations as to how policy makers can incorporate gender into national plans. AbstractGender is a neglected dimension in public discourse related to people with dementia. Those living with this condition are typically portrayed in policies and strategies in gender neutral terms as 'people with dementia' and 'family carers' as if gender does not matter, when clearly it does. The purpose of this scoping review was to take stock of knowledge about gender differences in relation to dementia care to inform policy and future research. The work is grounded in a feminist perspective to citizenship, as this provide a lens with which to expose and examine gendered assumptions within dementia studies. A search of four databases, including CINAHL, Web of Science, Medline and Cochrane was conducted using systematic techniques between May and July 2014. A repeat search was conducted in February 2015. We found a significant amount of valuable research concerned with gender differences in relation to dementia care published from 1990 to 2014; the majority of which lacks a feminist citizenship perspective. Moreover, a disproportionate number of studies focused solely on caregivers rather than citizens with dementia. As such, questions about gender equality are not being raised and the voices of men and women with dementia are silent. Thus we argue for increased gender-sensitivity in policy making and recommend that social scientists inject a feminist citizenship perspective into their work.

Depicting Dementia: Representations of Cognitive Health and Illness in Ten Picturebooks for Children

“…Though there are more women than men living with dementia, Mielke points out that the incidence is not always higher for women than men and that "sex and gender differences in the incidence of AD dementia may depend on the time period and geographical region" (2018, p. 2). It is notable that intersectional and feminist approaches to dementia are now exploring relationships between sex, gender and dementia, and the impact of these on care and public policy (Bartlett et al, 2018;Mielke, 2018;Sandberg, 2018;Rocca, 2017). Though full discussion of the significance of gender in children's books about dementia is beyond the scope of this paper, it is important to note that cultural narratives such as picturebooks do not simply reflect real-world statistics and experiences, but also help to shape the ways in which we understand dementia (including its relationship to gender).…”

Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life

“…The aim of this study is to explore everyday experiences and opinions of husbands living at home with a spouse with dementia. This knowledge will add to the small but growing body of research-based understanding concerning men in the context of dementia care, and may as well raise gender awareness among health care personnel (Bartlett, Gjernes, Lotherington, & Obstefelder, 2018).…”

Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)

“…Moreover, gender issues are seldom addressed in research on everyday technology use. For example, in a recent review of the literature on gender and dementia care [20], technology use was not even mentioned. When gender is mentioned in relation to everyday technology use, findings have displayed more stereotypic notions (e.g., males being more interested in technology than females) [21].…”