“What Do You Get? Nothing”: A Qualitative Analysis of the Financial Impact of Family Caregiving for a Dying Relative at Home in Germany

Background/Objectives: As a result of demographic change in Germany, the number of people in need of care is steadily increasing, with a correspondingly larger proportion of care being provided by family members at home. Family caregivers face significant challenges in providing such care, particularly when balancing work responsibilities. Many experience a loss of income due to reduced working hours or the necessity of leaving the labor market. Additional caregiving costs, such as medical expenses, transportation, and home modifications, further exacerbate their financial burden. Methods: This study consists of an online survey, which included the German version of the Carer Support Needs Assessment Tool (CSNAT), designed to assess the support needs of family caregivers. Respondents were asked to describe their support needs in open-text responses. To illustrate their experiences, a qualitative content analysis was conducted. Results: Out of the 320 questionnaires, 304 of them contained open-text responses that could be analyzed. Important themes included the need for support in the workplace, financial security, and assistance with administrative barriers. In addition to more flexible working hours and greater understanding from employers, the need for financial compensation for loss of working time was expressed. Conclusions: Despite a growing awareness of the gaps in support, the needs of family caregivers remain inadequately addressed, leaving them financially burdened and unsupported. Ultimately, this study calls for a re-evaluation of societal attitudes toward caring, arguing for greater recognition of the economic contributions of family caregivers and the implementation of supportive policies.