A qualitative study of the experiences of male and female spousal and adult children caregivers across the caregiving trajectory

Abstract

AbstractBackgroundCaregiving is not static and changes across the illness trajectory. Our first research objective was to determine phases of caregiving throughout the Alzheimer’s disease trajectory. Our second objective was to explore the similarities and differences in the experiences of male and female adult children and spousal caregivers to persons with Alzheimer’s disease over time.MethodWe applied a constructivist grounded theory approach to data collection and analysis. Forty spousal (10 husbands+ 10 wives) and adult children (10 sons+ 10 daughters) caregivers to persons with Alzheimer’s disease were recruited and interviewed using a semi‐structured interview guide.ResultWe identified 5 phases reflecting caregiving roles related to: 1) monitoring initial symptoms, 2) navigating diagnosis, 3) assisting with instrumental activities of daily living, 4) assisting with basic activities of daily living, and 5) preparing for the future. We were not able to identify any differences by gender or relationship in the caregiving phases. However, our results suggest that when looking at the experiences of caregiving from a gender‐and‐relationship lens experiences across the phases become complex and variable. For instance, spousal caregivers approach a dementia diagnosis with denial, with wives being optimistic for a slow progression of the disease for long periods of time. Adult children caregivers are concerned about the ways the caregiving role will impact their personal and career obligations and seek ways to mitigate the changes to their daily lives. Male caregivers largely utilize home and community health services to assist with personal care tasks whereas female caregivers utilize the same services to allow them to complete other caregiving tasks.ConclusionWe identified five distinct phases of caregiving and revealed that gender and relationship influence caregiving experiences across the Alzheimer’s disease trajectory. Recognition of the differential impact of gender and relationship on caregiving can inform future intervention efforts by suggesting ways to tailor interventions based upon gender and/or relationship to best support caregivers.