Female caregivers’ contextual complexities and familial power structures within Alzheimer’s care

Abstract

In 2021, 11.3 million unpaid caregivers of persons with Alzheimer’s disease/Alzheimer’s disease and related dementias (AD/ADRD) provided 16 billion hours of unpaid caregiving worth $271.6 billion. This study aimed to fully capture the contextual complexities of the caregiving role acquisition articulated by female family caregivers of those with AD/ADRD, emphasizing assigned meaning to one’s lived experience with a critical focus on how family power structures influence caregiving practices. Recorded open structured interview transcripts (N = 30) from two qualitative studies with the same two opening questions resulted in a corpus of 481 pages of pooled textual data. The data were analyzed using Utrecht’s descriptive and interpretive thematic analysis approach. The interpretive thematic analysis uncovered the theme of intervening to protect and its subthemes of financial exploitation, mistreatment, and endangerment. Based on the evolving analysis, we reanalyzed the data using critical discourse analysis (CDA), drawing from Foucault and feminist CDA to explore the complex but subtle nuances of gender, power, and ideologies. CDA uncovered the theme of compulsory altruism. Ambiguity about violating personhood delayed responses to potentially dangerous behavior and actual harm. Using interpretive thematic and critical discourse analysis, we discovered a deeper understanding of female caregivers’ contextual complexities, their journey to becoming a caregiver of a family member with AD/ADRD, and the power structures that relegated caregiving to female family members. This research identified a substantial policy gap in supporting female family caregivers who provide the majority of care to persons with AD/ADRD risking their health and financial security.