Perspectives of Women with Dementia Receiving Care from Their Adult Daughters

Abstract

The caregiving experience within Alzheimer disease is fairly well documented. However, little research has been conducted from the perspective of the person living with dementia. The purpose of this study, part of a larger qualitative investigation of mother-daughter relationships within the care process of dementia, was to elicit the perceptions and experiences of mothers receiving care from their adult daughters. Guided by feminist and life-course perspectives, the researchers conducted in-depth, semi-structured interviews with a diverse sample of 10 community-dwelling women with mild to moderate cognitive impairment. In general, the health perceptions and experiences of the women were shaped by gender and how its meaning is constructed. While mothers reported mostly positive relationships with their daughters, cultural ideologies of individualism and familism manifested in feelings of "grateful guilt." Participants managed their contradictory experiences of receiving care from their daughters by 'doing care, undemanding care, determining care,' and 'accepting care.' The authors recommend changes in practice, policy, and research, with the aim of addressing relevant social determinants of health such as gender and social support, thereby promoting the health and well-being of women with dementia.