The Hidden Patients - a Qualitative Study on Informal Caregivers in Germany

Regarding the aged population, we also detect a parallel growth of age related illnesses like dementia, Alzheimer’s disease or the like. In many countries worldwide, the majority of care for people suffering from these illnesses is realised at home by informal caregivers – their spouses, family members or close friends – due to cost or personal reasons. Often, the caregivers themselves are also at an advanced age. Both, elderly and still working-age family carers bear the heavy physical, psychological and emotional burden of taking care of their beloved ones at home. They are then at increased risk for psychical and physical morbidity like depression or burnout and can be described as our society’s “hidden patients” (Schulz & Beach, 1999). The contribution will present first findings from a sociological, qualitative study (observation and open interviewing) with this special group of elderly, informal caregivers in a rural area of Germany (Siegen and surroundings). The study is part of a larger, international and interdisciplinary research project called TOPIC (The Online Platform for Informal Caregivers), funded by European Commission and the Federal Ministry of Education and Research with partners in Vienna (Austria) and Troyes (France). First observations focussed on the every-day activities and routines within the households and underline the above-mentioned challenges for the informal caregivers in respect to time, energy and attention. Beyond that, the caring persons expressed the need for help in our talks, and not only in terms of financial assistance as often proposed by social institutions, but also for information and emotional support. This point is especially interesting from our point of view as we observed some people’s difficulties to express their feelings respectively their own needs.